Monday, January 18, 2010

Amber Waves of Confusion

Image University of Arkansas
I can eat wheat. I've received the results of my gastroenterology tests, and there is no evidence of celiac disease.
You'd think this would be an occasion for joy, but I finally got used to eating gluten-free, after six months, and... Well. That sounds nutty. Of course I want to dip into dim sum and bite into burritos now and then. Apparently I can do just that.
But during the week I ate a gluten diet in preparation for the exam, I experienced horrible symptoms. (No details; this is a family blog FFS.)
I haven't returned to have my consultation with the doc yet, and we will probably come up with some strategies.
It's rather perplexing. Just thought I'd share that with you.

31 comments:

Kailyn said...

My friend who has celiac does not have a friendly blog so I know all the details. Reading it at times made think of going gluten-free -- or to at least change the time of day for blog reading.

And yay for the possible return of gluten because really I can't imagine life without the occasional potsticker or BBQ pork bun. And scones with clotted cream and... Well, you get the point.

cookiecrumb said...

Kailyn: Ha ha. I gather that celiacs call it "the big D."
And yes. Boy, do I get the point. Thanks.

Melanie said...

I don't have celiac or anything similar- but decided to go gluten free because of some discomfort I was experiencing. I have to say, even though there's no actual diagnose, if it makes a difference, then go for it. I have really enjoyed being gluten free.

Jennywenny said...

I hope you work things out. I guess its a tricky disease to diagnose, and I gather you could have problems with gluten and not be celiac...

El said...

FFS! Hwah!

SO: now that I am dipping my toe into the world of home-grown grains, I am wondering: is it all wheat-like things, have you noticed? Like, does spelt and farro also give you agitta or how about sprouted wheat?

The reason I ask is it appears we only eat a few species of wheat, you know, the ones THEY think are easier to grow and harvest, and of course those same they don't necessarily have the eaters' needs at heart. So my sources tell me (yes, there's quite the underground in grain-growing, believe it or not) there are hundreds of varieties that just aren't grown. I am also wondering if it's anything like lactose intolerant people being able to drink raw milk products.

I'm just terribly curious. I mean, what IS it? Because I want you tucking into the occasional pita or tortilla or--gasp--cookie!

cookiecrumb said...

Melanie: It's hard to imagine going off wheat if you don't have to... but... I guess some of us have to. I'm really pleased with my diet, and so is my hubster.

Jennywenny: Yeah, I don't really understand it. Surprisingly, I'm happy. Life goes on. xx

El: Hwah! backatcha. So, yeah. I avoided all wheaten grains this past six months, but perhaps I should experiment with spelt or farro. (There's not much else commercially available; let me know when your crop comes in.)
I happen to have some super delicious gluten-free oatmeal cookies, BTW, and I'm not even all that into cookies. Really good. (Oh, and milk-free ice cream! Made from coconut milk; so good. Wait. Lactose-intolerant people can drink raw milk? Oh, I hate this stupid world.)

persephone said...

Congrats on the eat wheat-ability! Perhaps there are some residual things on the wheat that you are eating that is not gluten that might be causing your issues. Hopefully not residual pesticides or anything!

Here's a really good article that reminded me of you:
http://www.nytimes.com/2009/10/11/magazine/11food-t.html?_r=1&partner=rss&emc=rss

Elizabeth said...

My brother thinks this is all in my head. But I know now, after not eating cow dairy or gluten for several years, when I do, I feel it - boy howdy do I feel it. I've never been tested for allergies, much less celiac. However, I'm much better at listening to my body and what it craves/rejects at any given time. Today it craved half a loaf of seeded bread from our local GF bakery, with goat brie from Trader Joe's. Can't say as I'm missing too much ...

cookiecrumb said...

Persephone: OMG, what a great article. Thank you for sending the link. I'm suddenly open to a whole new way of thinking about this. I surely hope my issue is not about pesticides! Eek.

Elizabeth: I have to agree with you. We can eat what we know works for us, right? No need for diagnosis. (Though I've heard of symptom-free celiacs, and that's scary.)
Portland is so good for gluten-free! I'm coming up!

Zia said...

I hope you find a resolution to your gluten/wheat issue soon... there is such grief that comes with food disagreements!

cookiecrumb said...

Zia: I don't expect "soon" anytime soon. The medical system is so slow. My first doctor (who I eventually fired) wouldn't even refer me to gastroenterology.
I do appreciate your comforting words.

dancingmorganmouse said...

I've got nothing for ya bebe, except, did you know that my Small had the feline version of celiac disease? She went on a special diet for years and then, suddenly, she was better. So, there's hope, sort of, in a way, I guess(ish). Sorry, that's all I've got xx

Beth said...

Nerd talk: there are two types of gluten problems, celiac and gluten intolerance. They are not the same but produce similar symptoms (celiac is more severe).

When you are tested for celiac or gluten intolerance, you will test negative if you don't have any wheat in your system. Doctors assume you have enough wheat in your diet to trigger the response on a daily basis; you need to eat lots of wheat in the 24-48 hours preceding the test to trigger the response (if you have it).

Regardless of what the testing shows, if you feel better not eating wheat, keep on not eating it.

The tests are called the IgG and IgA immunoassays, by the way.

cookiecrumb said...

Mouse: Wild. Never knew that about cats. I'm so glad she's doing better in her -- here it comes -- crepusculence.
xo

Beth: Brilliant. Thank you. I did the two immunoassays, and tested positive on the less reliable one; negative on the sure-fire one. But. Still. You are right, eat what feels good. I'm curiously happy with my gluten-free diet, at exactly the moment when I have been cleared of celiac disease.
(PS: I didn't eat wheat for 48 hours before my exam! One day I just couldn't bear to stomach anymore gluten. Next day, I was on the electrolyte purge. I wonder if... oh, well...)

Amaratay said...

Blood tests assess RISK of celiac disease but can not confirm it (see celiac disease foundation). Talk with your doctor -- your results may not be definitive. And I'm with Beth on eating what makes you feel better. You're the expert on you.

cookiecrumb said...

Amaratay: Great. I'm so happy to have intelligent input.

Zoomie said...

Another reminder that doctors really don't know everything, that we pay them for their best guess, and that what works for one's innards is what one should be eating. As long as you and Cranky are enjoying meals, who cares whether in theory you can eat wheat? The only thing I can think of that you are missing is pizza and I'm sure there's a GF version that would work just fine.

cookiecrumb said...

Zoomie: I am thisclose to creating a pizza dough that I suspect will be great. Oh. But I don't crave pizza all that much. Maybe I've always been wheat-aversive?

dancingmorganmouse said...

Best use of crepusculence EVER!

cookiecrumb said...

Mouse: Purrrrr.....
xxx

Zoomie said...

I thought you missed pizza as you commented with longing on all my pizza posts but if you don't even miss it, you're in clover! Ignore the doc if you're feeling better, and continue with the current regime.

Rev. Biggles said...

I'm sorry. I know how it is to think you got some fancy disease or ailment. Then, come to find out that you don't. I don't listen to my body for the same reason I don't follow what the voices say. They always lead me astray. Woot!

xo, Biggles

cookiecrumb said...

Biggles: You shut up. I don't WANT to have a disease, no matter how much of a hypochondriac I am. So it's nice not to have one, even though I still seem to. Understand my confusion? Yeah, neither do I.

Greg said...

So many comments! I was holding off with mine because then I would have to admit I HATE DOCTORS! They call it the "practice" of medicine for a reason.

cookiecrumb said...

Greg: I so agree! I avoid doctors, possibly at my own peril. But then, you get to be our age and you realize you need some tuning up. :(

mimicooks said...

On the bright side, your diet is probably way more varied on the gluten free diet.

Comfort Food said...

My daughter, who is 7, has the same problem. Stomach problems all the time, never feels well. We go gluten free, all's well! Tests come back negative, Doc says,"You're free to eat whatever you want, Little Girl!!"

You try arguing with a stubborn second grader about the benefits of a gluten free diet when the Doctor has said you're cured! ..Grumble Grumble, stinkin medical system...

At least I've gotten her to recognize that she FEELS better when she's gluten free. Baby steps.

cookiecrumb said...

Mimi: Not so much more varied. Eliminating bread and "normal" noodles has been hard. But I could live on rice and beans forever. xx

Comfort Food: Aw, pity about your girl. And yet, there is a world of tasty food free of gluten. My husband won't LET me eat gluten now, despite the test results. I'm grateful for your wise comment.
(BTW, my doc is totally fine with me skipping wheat. He said, "Bread is junk!" I think he's a celiac.)

Barbara said...

Hope you find the solution soon. I would hate not being able to eat wheat. I adore bread.

cookiecrumb said...

Barbara: I had some pizza last night, and I can't say I'm suffering. It's probably something I can enjoy once in a while, but that week of stuffing myself with wheat was brutal.

cook eat FRET said...

the older we get - the harder it is.

that's all i'm sayin, sistah...