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Scheherazade in Blue Jeans
freelance alchemist
Okay, yeah, no, we're still on this. 
18th-Jul-2010 07:49 pm
Brain worms
Because it is pissing me off.

Hi, I have celiac disease. It is not an allergy. It is an autoimmune disorder caused by an intolerance to gliadin, a protein found in wheat, barley, rye, spelt, kamut, et cetera. If I ingest gluten in even tiny quantities, the reaction starts with stabby abdominal pains, continues with hideously itchy skin and brainfog, and results in a lot of gastrointestinal pain and issues that you don't want details on, plus massive fatigue and pain; it's an inflammation thing, so think of it like the pain from rheumatoid arthritis or lupus. Those last few last for a while.

I'm lucky in that this is the only autoimmune disease that has a known and avoidable trigger. The way to avoid all of this mishegoss and more (I have/have had most of the symptoms on these lists, including the dental issues, seizures, and recurrent miscarriages) is to maintain a 100% gluten-free diet.

Forever.

The good news is that if I stay off gluten, I am much healthier; I have energy, I'm not in pain, my brainfog is gone (I'm smart again!), et cetera.

The bad news is, of course, that it's difficult. Here's some 101, and lists of unsafe and safe foods. The risk of cross-contamination is pretty big. Also, not everybody knows where the stealth gluten is hiding. Who thought it would be in soy sauce? Or blue cheese?

So dining out is a bit of a challenge, but it's one I'm up to. Yelp.com is a great resource, because when a celiac gets glutened at an allegedly-safe place they tell the world. I found Sel de la Terre on Yelp; they don't have a GF menu, but celiacs gave it good reviews, and I was not disappointed. I can do the research. I don't expect anyone else to do it for me.

But what you can do for me, should we be dining out, is not fucking eyeroll at me whenever I say the words gluten-free.

Because look. This is not easy for me. Bread has always been my comfort food, and I'd dearly love to have a chunk of the bread on the table. I would like to be able to order whatever I want. The Cajun rabbit at Small Plates looks awesome. But it's not GF, so I can't have it. I don't whine about that, I just order a different delicious thing. But it's not easy, and it is not me being sensitive or trendy. It is an actual necessity. I hate having to send the waitress to the kitchen to ask if the chicken is safe just as much as you hate being delayed in placing your order. Probably more. I was raised in the sort of family that speaks about medical conditions in whispers. But the physical cost to me is too great for me to not make it clear to the waitress that I have this disease that, if it's a good restaurant, she's been trained on. Me just saying "I have celiac disease" in a restaurant with trained waitstaff makes my life so much easier and safer.

I am not doing this to be difficult, dammit. So stop shooting me looks whenever I ask for the gluten-free menu.

Just - aaaaagh. A whole weekend of this.

"Well, can't you just eat a grilled chicken breast with nothing on it?"
"Yes, but I can also have the espresso bistro steak and squash "fettucine", and that's much better."

Because I still love food. I still love real food what has a flavor. Plain salads and grilled chicken with nothing on it have a flavor, and that flavor is deprivation. You can get really good food gluten-free. I promise! You just have to do the legwork and have the conversation with the server and you can eat like a normal person.

"Can't you go to a regular restaurant?"
"This is a regular restaurant."

Because it has a GF menu it's not a regular restaurant? I do not even know.

"You're not going to make us eat that vegan gluten-free... stuff, are you?"
"You can eat whatever you want. I'm not vegan anyway. I'm having the steak."

You can eat gluteny stuff at the same table as me. Please try to pass the bread basket around me and not directly over my plate, and if you want to try my food, let me scoop some onto your plate so the crumbs from your fork don't get in my food. But you can eat whatever you want. If you intend to kiss me afterward... tooth-brushing is ideal, but drinking a lot of water is probably good. Depending on how much kissing, and the intensity of said kissing, et cetera. But, Adam's mom's friend, our dynamic is not like that. So.

And the thing is, she loved every restaurant. Raved about last night's food. But before and after and during, she kept giving me the damn pushback on the gluten-free diet.

Lady.

This is not easy or fun, but it is necessary.

Also what the hell.

So yeah. I would love to have dinner with you. But if you eyeroll me for asking for food that isn't toxic to my system, I am so not going to be your biggest fan.
Comments 
18th-Jul-2010 11:57 pm (UTC)
What we always have to do with Ken, is that he waits until last to order, because he has to ask if his food will send him to the hospital or not. So when the waiter has to go back to the kitchen to ask about his food, that means she can enter the REST of the table's order while she does so.

And we also make sure to mention that it isn't just a matter of not liking green peppers, it's a matter of the waitress needing to order an ambulance along with dessert if they're hiding in there. That may be overstating your case a little, but it would definitely get your point across. If you treat it just like an extreme food allergy, and imply that people not taking it seriously will be attempting your murder, that might just put the kibosh on the eye rolling a little bit.
19th-Jul-2010 12:01 am (UTC)
I just - I have the whole "I cannot tell a lie" thing and also the geeky precision thing. So I balk at presenting it as an allergy. (I don't balk on the topic of my actual allergies, mind; I will say "shellfish will send me to the ER.") Also I feel like if the waitstaff does fuck up and put breadcrumbs in something and I don't fall to the ground writhing, they'll assume that celiacs exaggerate, and they'll be laxer with the next celiac.

I will keep the ordering-last thing in mind!
(Deleted comment)
18th-Jul-2010 11:59 pm (UTC)
I feel ya. I'm gluten-, dairy-, soy-, and peanut-free because I'm still nursing the Changeling (yeah, I'm one of those hippie moms, which is a whole other pile of eyeroll right there). My mom is constantly "Well, he can't have xyz, sure, but certainly you can have just a little, right?" NO WOMAN I BLOODY WELL CANNOT. YOU NURSED THREE CHILDREN, DO YOU NOT UNDERSTAND HOW THAT LACTATION THING WORKS YET.

*headdesk*

More constructively, did you try/like the GF macaroons I brought to Readercon? I can hit you with the recipe if so. Easiest thing ever. You just need a dehydrator. :)
19th-Jul-2010 12:02 am (UTC)
LET ME TELL YOU HOW SCIENCE WORKS

Yeah.

Yes! Especially the vanilla ones! Do please shoot me the recipe; I don't have a dehydrator, but I probably know someone who does and can be bribed with macaroons.
18th-Jul-2010 11:59 pm (UTC) - Well for what its worth..
I figured out from your lj that that is what is wrong with me....:)
19th-Jul-2010 12:01 am (UTC) - Re: Well for what its worth..
Yay, I helped! How's it going?
19th-Jul-2010 12:09 am (UTC)
I have NO patience with eyerollers like this. NONE.

Okay, so you don't "believe in" celiac disease. I get it. But your superstitious refusal to acknowledge medical and scientific reality is really your own embarrassing problem and should probably be kept to yourself.

aHERm.

assholes.
19th-Jul-2010 12:31 am (UTC)
Seriously. This thing is for reals! Science tells us so!
19th-Jul-2010 12:10 am (UTC)
Also, I am very sorry that you had to deal with this.
19th-Jul-2010 12:12 am (UTC)
*head-desk*

I have, on occasion, been clueless about people's food allergies and other food-related health issues. I've screwed up a recipe or two. But eye-rolling undercutting rude behavior? Don't think so. Heaven help me, I never will.
19th-Jul-2010 12:13 am (UTC)
I do have a bad food allergy..[fish/shellfish] so I get the whole 'cannot eat XYZ or it kills me.'.. but man, you'd think by now someone would get the idea that for you, foods XY&Z aren't kosher [kinda].

Still..*ponders science* celiac disease is an autoimmune reaction to a foreign protein, so I wonder if some modified gut bacteria, designed to break it down before your immune system even saw it, would work to mitigate the disease...

One could include the right protease gene in a species like say yoghurt bacteria, like a friend of mine is trying to do with vitamin C ...
19th-Jul-2010 12:14 am (UTC) - BTW new GF stuff
Damn! I knew I forgot something useful. The Good Health store in Quincy (near Red Line) has some new FT brownie/muffin-type stuff. Can't remember if it was mix or already baked, but I had a bite the last time I was in there and had to fight the urge to lick every last sample off of the table. Will be happy to do recon for you...
19th-Jul-2010 12:32 am (UTC) - Re: BTW new GF stuff
Oooh.
19th-Jul-2010 12:22 am (UTC)
I have to say that I don't understand how people can have an issue with this. I mean, I do understand, because people can have an issue with anything, and cheerfully will. But we have several celiac friends, and before they come to our house, we ask them for guidelines of what they can and can't eat.

What we've discovered is that we can make most of our meal gluten-free (and meat-free, for our celiac vegetarian friend) without actually going too far out of our way, or making dishes that will be unappealing to our non-GF friends.

We just go through our repertoire of side dishes and pick the ones that are GF, or can easily be made with GF ingredients.

It's really not hard. We don't have to go out of our way at all. There are really plenty of tasty dishes that we make regularly that don't contain gluten--it just takes a few minutes longer to run through the ingredient list in our heads.

So that is why I don't understand why people have such a problem with this. It's just not so hard to accommodate GF friends, as long as you're willing to ask and try and put just a bit of thought into it.

And when it's dinner in a restaurant, and I don't even have to make the food, just help you find something GF that you can safely eat? Seriously don't understand why people have a problem with that.
19th-Jul-2010 12:36 am (UTC)
What we've discovered is that we can make most of our meal gluten-free (and meat-free, for our celiac vegetarian friend) without actually going too far out of our way, or making dishes that will be unappealing to our non-GF friends.

It can be done!

Adam was mentioning to them that the GF bakery walking distance from our house is so good that he gets muffins from there for himself. The texture is just like regular muffins, and oh man the flavors. The banana chocolate chip ones are awesome, and the carrot cake, and the chai - they had a ginger currant muffin Saturday that was fantastic.

Also there are whole cuisines that are pretty safe. Indian food is safe, mostly. I can't have naan anymore, but I can have lamb vindaloo and chicken tikka masala. I tend to always suggest Indian when I'm out with friends because I know I can order there without being a pain in the ass.

But yeah, lots of stuff can easily be made GF.
19th-Jul-2010 12:25 am (UTC)
I hope you do not mind that I am laughing. At her and her ignorant eyerolling.
19th-Jul-2010 12:27 am (UTC)
If the paperwork every goes through and I get access to my hellhound, that woman is going on the 'to be gnawed' list.

And I'm gonna stand where she can see me and roll my eyes.
19th-Jul-2010 12:38 am (UTC)
It's like me and the caffeine thing. :,

("But you're ordering decaf, and decaf has a small amount of caffeine in it, so you must be able to tolerate it!")
19th-Jul-2010 12:43 am (UTC)
Reminds me of a conversation feste_sylvain had in the consuite at Readercon.

Person running consuite: "That dip is gluten-free."
Feste: "Ah! Then I won't dip my pretzel in it."
Person running consuite: "Well... it's been by the bowl for a while. So it's probably not gluten-free anymore."
Random douchebag: "God, people overreact."
Feste: "Uh, no. It's an actual medical condition."
Random douchebag: "Pfft. Some crumbs aren;t going to hurt them."
Feste: "Actually, they will. As little as 20 parts per million of gluten can cause a reaction."
Random douchebag: *actually stops and thinks*

Feste would've sat down to educate him on how autoimmune disorders work, but it was deemed unnecessary.
(Deleted comment)
19th-Jul-2010 01:37 am (UTC)
Oh, good heavens!
FYI, everytime I see that someplace has gluten-free items or interesting gluten-free items (OMG my local Kroger has some AMAZING Red Mill stuff!!!) I get all excited and want to tell you immediately.
It's like a Where in the World is Carmen SanDiego game- Where in the World is Awesome Gluten-Free Food that Looks Delicious!

I smack your mom's friend upside the head.
19th-Jul-2010 01:45 am (UTC)
Bob's Red Mill is great! I just discovered Udi's sandwich bread (well, doeeyedbunny did, but when she spwaks, I listen) - it is just like real sandwich bread. Freezer section at whole foods. I had a peanut butter sandwich the other day that actually felt and tasted like a peanut butter sandwich.
19th-Jul-2010 01:54 am (UTC)
Whatever happened with the a-hole doctor who did the wrong test?
19th-Jul-2010 01:57 am (UTC)
I never got back to that; overwhelmed and overdone and could not deal. I will write a letter to the hospital board when there's breathing room and see what happens - that feels like the next step.
19th-Jul-2010 02:32 am (UTC)
Ugh... I hear you on this one...

It's bad enough to get crap from people you're eating with, worse when the restaurant staff doesn't take you seriously...

It's why my new catering endeavor is allergy and celiac friendly... no one should have to feel like they're being "difficult" or "high maintenance" just to get good food they can eat.
19th-Jul-2010 02:50 am (UTC)
*Sympathy!!!*

I don't know if the symptoms that vanished when I stopped eating wheat were due to celiac or an allergy or something else--the wages of simply changing my diet rather than consulting a doc and running up bills. I do know that when I started eating things made GF, I increased my intake of corn products, and the gastrointestinal symptoms came back--and I tested positive to having a corn allergy years ago.

But diagnosed or not, food intolerances are real and can be serious, and it's incredibly rude not to respect someone who is only trying to take care of themselves.

And I have developed a real respect for someone who says, "I don't know" rather than assuring me that "of course the fried rice is safe, it's rice, right?"
19th-Jul-2010 03:26 am (UTC)
I will continue to quite happily chomp down GF pizza with you. And other GF foods.

nomnomnom
19th-Jul-2010 04:01 am (UTC) - Sheesh, People...
I don't know if I have an allergy to gluten, or an allergy to wheat. I seem to be able to eat whole grain wheat free rye bread (the loaves that looks like a house brick). I do know I have some kind of allergy to most things in the 21st century (chemical perfumes, artificial food additives, many laundry soaps and cleaning agents...). I know when I eat products that contain wheat flour I'm clutching at my asthma meds and watching my ankles swell, and I know when I don't eat wheat products I'm nearly off all meds. That in itself is worthy of me paying attention to what I eat. I find I have a mild tolerance. One Nilla Wafer won't send me wheezing; two slices of toast will. Likewise with milk. A bit of milk chocolate won't have me reaching for my rescue inhaler. A milk shake will. I've learned, and I'm now paying attention. Big time.

What baffles me is I've had terrible asthma all my life. I've taken so much asthma medication that I now have a heart problem from it (whole other story, maybe for another time; I have asthma but it doesn't have me, so I don't dwell on it, you know?). About 20 years ago, I asked a so called specialist if there was any relationship between my asthma, and wheat or dairy products. He asked me if I'd eaten them all my life and I said yes, so he said he doubted they affected me. Well, I've had asthma all my life, too... eh... am I the only one that sees something here?

But the whole thing about all of this that REALLY ticks me off is this: it is MY body, and I have a RIGHT to choose what I do or do not expose it to. I happen to be a vegetarian. If someone wants to come visit me and their favorite food on the planet is a cheeseburger, I will happily fix them one because I love them. All I ask is that they don't force me to eat it when I don't want it, and don't force me to see things the way they do because they have a different opinion than I, you know?

And I'm still convinced that we'd all get along a lot better with each other if people would just learn to mind their own business, and keep their mouths shut about things that don't concern them.

Okay, off my soapbox now.
19th-Jul-2010 05:08 am (UTC)
*nod* Greg has a severe food intolerance to milk, eggs, and peanuts (and I suspect he may be celiac). You would not BELIEVE the number of people who think it's okay for him to eat butter, then, or that it's fine to remove the cheese from his burger and re-serve it.

Fucking people, sometimes.
19th-Jul-2010 10:46 am (UTC)
I'd believe it. Elayna had a milk allergy when she was wee, and all the time we got "but she can eat ice cream, right?" Or cheese, or yogurt - she actually ate yogurt once because she didn't know what was in it and she'd told the person she was allergic to milk, so she figured since they were handing it to her it must be safe.

By first grade she had a litany: "I'm allergic to milk and all dairy products. That means milk, chocolate, cheese, ice cream, yogurt, butter..."
19th-Jul-2010 10:47 am (UTC)
Much sympathy. I think some of the problem is that many people started hearing about GF stuff not long after Atkins came into popularity, and thus they think its a diet fad and NOT a necessity.

It is with the anger making, and makes me want to slap them.

I've never encountered the depth or range of problems that a celiac has in our culture. The closest thing I've expereienced is that I can't have any artificial sweetners including Splenda.

They give me flu like symptoms, extreme tiredness, and send me to bed for a good day or so. It takes a bit for it to get out of my system.

My favorite comment of all time in relation to this was an outraged remark of "Splenda? How can you be allergic to Splenda? Its a sugar." complete with eye rolling and disbelief.

Yeah, its a sugar the same way road salt is a salt - but I wouldn't want to eat that either.

(For what its worth, Splenda is a sugar but its chemical chain twisted the other direction than normal sugar (can't remember if its right or left) and has a OH ion replaced with Chlorine)).

People need to actually understand that just because something works fine for their body, doesn't mean its fine for someone else. I don't know why this is so hard for some folks.
19th-Jul-2010 10:50 am (UTC)
I really think she was considering it a fad diet and thought I was just being Difficult.

Splenda tastes awful. No one else I know can taste anything but sure in it! But it has this awful chemical grossness to it.
19th-Jul-2010 10:59 am (UTC)
One of our work clients has a gluten intolerance, and has repeatedly been *astonished* that I make sure that we take her to lunch places which I know offer specifically gf options. It's not like it's difficult; we're in a financial district and there are tons of restaurants to choose from. Who exactly would benefit from someone having gluten-based misery as a result of a meal?

(Though in at least two cases we've gone to chain restaurants that I know have branches in her home town and she has been unaware that they offer gf food. I am sort of horrified at her lack of researching these things.)
19th-Jul-2010 02:32 pm (UTC)
I breathed such a sigh of relief when reading this. This is how I feel about my allergy. I feel as though other people feel I'm making A Production out of it, that I've got some psychological glitch rather thana physical one (and I have psychological glitches, but not so much about this. I'd MUCH RATHER get to go to the movies. :P)
So thanks for posting it. It helps.
19th-Jul-2010 03:38 pm (UTC)
A friend we used to hang out with was so allergic to mushrooms that when she was in the room with someone cooking them the half of her face closest to the oven, started breaking out in a rash...and she was a room away!

So, I understand.

Usually, the way I've dealt with overbearing, opininonated twits like this one is to calmly explain that eating whatever it is could KILL THE PERSON if they ingest it. My friend who has a milk allergy started reacting because one of our other friends accidentally got sour cream on his scalp.

People don't do this stuff for FUN. Aaaargh!
19th-Jul-2010 03:52 pm (UTC)
"But what you can do for me, should we be dining out, is not fucking eyeroll at me whenever I say the words gluten-free"

This is why my mum doesn't eat out any more. That and accidental glutening.
She was very, very sick before diagnosis, to the extent where she could actually have died.
It's not something she wants to be 'picky' about.
She's SO EXCITED about coming to Boston in a couple of weeks, because at least here restaurants have heard of gluten free!
It's so hard to find anything safe to eat in the first place without people making it worse by being unsympathetic, or thinking it's something you can just sleep off if you accidentally eat the wrong thing.
19th-Jul-2010 04:11 pm (UTC)
WTF. Total boundries foul. I suspect Adult-Child of Alcoholic syndrome.

1. You control your food. (Bravo, BTW)
2. You let her control her food. (Second case of WIN in the equation.)
3. You are clear on your boundries and explain why contamination, even by fork, is bad.

Lady needs some lessons in being a decent human being.
19th-Jul-2010 04:13 pm (UTC)
Yeah, on #3 - I literally blocked her incoming fork with my hand.
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