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Scheherazade in Blue Jeans
freelance alchemist
Correcting a Misconception 
28th-Dec-2010 10:54 am
Figuring shit out
I think I see a misconception going on in the comments to my "I am starving and frustrated" posts. It is a totally understandable misconception. So I want to make things clearer.

I spend Christmas with my birthfamily.

The family that raised me where we push each other's buttons like whoa, I refer to as my family.

Quick backstory for new kids: I was adopted when I was six weeks old. My birthmom found me when I was four. For the last ten years, we've been visiting her brother and sister-in-law's house with her Christmas week.

I do not have past drama with my birthfamily! So there is no "they keep disrespecting you" thing. That's the family who raised me, to whom I apparently will always be 14 and Trouble.

So everything that happened this year should be judged on this year alone. And it is solely 100% because they did not understand my condition. (I'm pretty sure they still don't get it, but progress has been made.) Remember, last year at this time, I was eating gluten to deliberately fuck up my intestines for a biopsy - and I timed the biopsy the way I did so as not to inconvenience them.

Additional data point: They have never seen me non-glutened, save the first day of our trip. So one thing we were running up against was that I didn't seem much different, so this picky eating thing, what?

Whereas my parents who raised me, who I *do* have the drama with, have actually seen me non-glutened and know how significant the difference is. So even though Dad still says "well, a lot of people who have celiac can have a little gluten" and doesn't really believe me when I tell him that isn't so, he still won't cut things with the same knife, even if he eyerolls like he's humoring me. Because he's seen that it actually makes a difference. I think he just thinks my body is hypersensitive, and it well may be, but I want him in the habit of that level of attention, because he has co-workers with celiac.

So this is not a "that branch of the family sucks", thing. It's just this complete lack of understanding of this thing. I keep running up against the wall of that - I told them about it last year, and I reminded them in e-mail, and I sent links to read. But I think they didn't read them. Which is really frustrating, because when someone I know has a medical or dietary issue that affects my interaction with them, I read up on it. And act on it. Example: I had three cat-allergic people at Thanksgiving. So I scrubbed the house down, but not day-of because that stirs up dander. And I asked how allergic each of them are, since I know one is fine as long as she doesn't touch the cats and touch her face right after; one was so allergic that the cats couldn't be in the same room, so I moved them upstairs with food and a litterbox for the duration. To me, that is what you do.

I don't know where the disconnect is.

But yeah, this is Frustration for me, not Rage. Because this is this one bizarre isolated thing that is nonetheless really important. I think if they saw me well even once they'd get it. I hope. Because otherwise they're awesome.
Comments 
28th-Dec-2010 04:20 pm (UTC)
I have fortunately not run into this level of frustration before. Of course, with my family, it helps that my mother is also gluten-free and much noisier about it and willing to go on at length about it than I am. Christmas this year actually had a bunch of stuff specifically made gluten free. Apple crisp with rice and corn chex for the crisp, GF bread stuffing.

The main time I run into problems with it is going to someone's party or something. Honestly, it's not usually that I'll starve, because I can usually find something guaranteed safe in the finger food category. The one thing that irks me is the folks who don't understand how pervasive gluten is, and snark at me for asking.

I went to a party recently where someone had some food in a crock pot with a thick sauce, so of course, I asked, and they were like, "No. God, you think gluten is in everything." No, gluten is used in sauce thickening, for fuck's sake. It pisses me off when people get snarky at me for just making sure.
28th-Dec-2010 04:21 pm (UTC)
Now and then I want to say, "Well, I assure you, my annoying question is far less problematic than my taking over your bathroom with heinous cramps and digestive woes."
28th-Dec-2010 04:24 pm (UTC)
The one thing that irks me is the folks who don't understand how pervasive gluten is, and snark at me for asking.

Yeah, I think the person who took over the ovens was irritated at Adam for asking. "What cheese is in it? Whatever cheddar was in the fridge. I don't know what brand." Then you can't try to pass it off as GF, lady.

No, gluten is used in sauce thickening, for fuck's sake.

Uh, YEAH. One of the most common places it shows up!
28th-Dec-2010 04:30 pm (UTC)
I don't care if it's glutenated. I really don't. If it is, cool, I don't ask or anywhere near expect that people modify everything for me. I just want to know so I don't eat it, so it irritates me when people get mad at me for asking.

That said, my girlfriend from AZ is planning all sorts of yummy GF stuff when I visit and is even going so far as to ban gluten from all 'dinner' meals while I'm there so I can eat anything on the table. Which is so very sweet of her. Hurray for the good ones!
28th-Dec-2010 04:36 pm (UTC)
I don't care if it's glutenated. I really don't. If it is, cool, I don't ask or anywhere near expect that people modify everything for me. I just want to know so I don't eat it, so it irritates me when people get mad at me for asking.

Exactly.
28th-Dec-2010 07:22 pm (UTC)
From adopting a certain diet by choice about 16 yrs ago (vegan), I have noticed most people try to stay very ignorant about what they eat and some seem to be oversensitive to even the hint that their food choices impact them and that they actually have control over it. I have had people ask me why I am vegan, they then either start defending how they eat or make excuses for it (I honestly don't care what they are doing, I just want to finish my meal!), or they get mad at me for trying to 'make them vegan' just because I am telling them why I am vegan (after they asked)...lol.

I often will eat something before going to a party if I think there won't be much for me there. I made the mistake 2 x-mases ago of not doing that when I went to a Chamber of Commerce dinner. Every main dish was meat-based and every side had cheese all over it...including the salads! You gotta love the 'oh, just pick it out of the food' lol. Someone actually suggested that to me once for a beef and broccoli dish they brought to a party!

I assume it is pretty similar for any other kind of 'restrictive' diet.
28th-Dec-2010 07:35 pm (UTC)
And if a dish is made with chicken broth, how can you pick it out of the food?

(Am not vegetarian, but have vegetarian friends.)

Yeah, I eat before I go to parties and usually bring something.
(Deleted comment)
28th-Dec-2010 07:11 pm (UTC)
Well you can tell your dad that doctors know (me being one) that unlike a gluten allergy, every little bit of gluten someone with Celiac eats does cumulative damage and raises risks for certain cancers and other problems.

Family is always weird in that they see you as who they used to think you were, not who you are.
29th-Dec-2010 07:15 am (UTC)
This. Also send a book by snail mail if email doesn't work, and make it clear that if they don't get better about it, they won't have you staying there for Christmas next year - not because you don't love them but because your health isn't up to it - and that this would be as deeply sad for you as for them.
31st-Dec-2010 03:15 pm (UTC)
*agrees*
28th-Dec-2010 07:49 pm (UTC)
Gotcha now. *nods*

It amazes me how you keep your life straight sometimes...
29th-Dec-2010 01:02 am (UTC)
Thanks for the clarification. I had gathered most of the details so far.

I would sit them down before you leave (or call them) and say "Listen. This is my health. I know you don't know what I'm not like unglutened, but you have to trust me on this. I will not do this again next year. I'll resend the links next year, closer to the holiday, and will even include a couple recipes that you can make if you want. If I come down here and go through this again, I will not be coming back."

And then, when you send the emails closer to next Christmas, you should restate whatever you tell them now.
31st-Dec-2010 03:15 pm (UTC)
*agrees*
29th-Dec-2010 09:53 am (UTC)
And all the madly allergic-to-cat people thank you for your due diligence. :)
31st-Dec-2010 03:07 pm (UTC)
Yeah, we went to mum's for Boxing Day and she gave us roasted vegetables as a side dish. She added well fried onions in the process of roasting the veg. She knows that onion is one of the foods that trigger my IBS.
"Yes but it is only a small amount and it is well cooked?!"
*sigh*
Yes, onion upsets her stomach in larger amounts and if it is not cooked well enough. I. AM. NOT. YOU. MUM!
She at least did not put any dairy in anything this time.
I tried to explain that onion has a biochemical in it (I forget its name) that shallots do not have and that cooking with onion, even if I eat around it, means that substance gets onto the other food in the same casserole and MAKES. ME. ILL. FOR. A. WEEK. Which it has. And we are eating there again tomorrow. Ah well, exmas and New Year only happen once a year…
Although the last time she and I went to visit my gran and mum brougs food to reheat it ended up being fish poached IN. MILK.
Maybe she will understand it one day. Then again, she is not getting any younger.
*does not hold breath*
*copies comment to a post on my LJ because I have forgotten to blog about it*

Edited at 2010-12-31 03:10 pm (UTC)
9th-Jan-2011 07:01 pm (UTC)
I realized it was yor birthfamily and was horrified. You have been so happy with them.

I hate to say it, but people do change. This economy is causing stress that is changing a lot of people super-fast. And someone else on my f-list has had to deal with absolute misery living with someone zie used to totally trust and admire, who saved hir life - but is now much older and has morphed horribly. The racism is a tip-off. I hope I'm wrong :-(

M
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