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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.


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.


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.
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.


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)


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.


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)

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
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.
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