Breaking up

A few years ago, El Grande and I went to see the play True West with Phillip Seymour Hoffman and John C. Reilly. The play itself is just a great piece of drama about brothers, and Hoffman and Reilly were alternating nights playing each brother. The night we went, Hoffman was playing the "good" brother (or is he a robotic patsy?) and Reilly was playing the "bad" brother (or is he a visionary who just hasn't hit things right yet?).

Toward the end of the play, there's an extended scene in which Hoffman's character makes toast and butters it. Dozens of pieces of toast. As the theater filled up with the smell of delicious WonderBread toast I got so hungry I almost couldn't concentrate on the rest of the play, and was just waiting until the end of the show when they'd pass out the toast to the audience members.

Then one of the characters smashed all the pieces of toast! So instead of taking me to Ben & Jerry's, where we always go after seeing anything on Broadway, we came straight home and El Grande went to the bodega and bought a big loaf of WonderBread and I made about 10 pieces of toast and buttered them and devoured them, standing at the kitchen counter.

I can't eat toast anymore.

Since I discovered how awful eating wheat makes me feel, I've been going through a slow mourning process for all the foods I can't eat anymore. It's strange, this not being able to eat things. In the past I've been on diets, been vegetarian, fishatarian, poultryatarian, vegan, dairy-free but meat-eating, low-carb, no sugar, and all sorts of other combinations. But this is the first time that not eating something isn't just a matter of principle or not wanting to gain a pound. When I eat things with gluten in them I feel nauseated and headachey and flushed and exhausted. The more gluten (like bread or kneaded cinnamon rolls) the worse I feel.

I'm sure there are a few gluten-containing foods for which my enjoyment of the food will be greater than the discomfort it causes. But I'm still working on that. Instead, I just keep realizing there's another food, and then another, that goes on the list of Things I'll Never Eat Again. (If only I'd know--I would have eaten them all one last time, savoring each painful bite.) I must still be in the shock stage, so maybe writing them down will help move me through it faster.

No more:

bread
cinnamon rolls
pie crust
cake
cupcakes
special birthday cake that my mom's made for me every year we've been together on my birthday
dim sum (wheat in the dumpling wrappers)
banh mi
Coke (caramel color)
Dr. Pepper (ditto)
soy sauce
croissants
Oreos
bagels
macaroni and cheese
Italian pasta
funnel cakes
sugar cookies
grilled cheese
zebra cake
hot dog or hamburger buns
scones
muffins
falafel sandwiches
spinach pie
anything thickened with a roux
and more

It's like losing a lot of who I thought I was, in a way. I was trying not to make this maudlin but to convey how sad I am at the same time, but this seems to be turning into a Barry Manilow song so I'll stop and go to bed now.

Comments

[Andi]

Delurking to sympathize with you. I was just diagnosed with celiac last week and have been craving a slice of pizza since then. And real cookies that don't taste like rice. :( At least I still have sushi.

[AmericanFamily]

Oh, the banh mi and oreos would send me right over the edge. Maybe once you really get used to it, you will feel so much better that you won't miss all those glorious foods.

[Robin]

I've read that play - would love to see it some day.

Would you write about what you do eat one of these days? I would be interested to know that. xo

[Kate]

Ok, you do know about Gluten Free Girl, right? (not sure of the link--I think it's a Blogger site) And somewhere in your neck of the woods there is a gluten free bakery.

But, oh, I am sorry. The little voice never really goes away--I've been keeping kosher for 13 years and I still sometimes would love to eat any sort of crustacean. Well, I was never a fan of oysters, but a lobster or some nice hard-shell crabs or shrimp scampi...yummmmm. Oh well.

There are still flavors of Ben and Jerry's you can eat, right? So it's not a total loss...

(Love that story about the toast, though!)

[rocketdyke]

you should commiserate with J over the missing things you cant eat anymore. we tried to make marshmellows once with agave syrup just so she could have some (since corn syrup is basically the only ingredient in marshmellows.) needless to say, they were a little weird. we even tried to use potato starch cut into extra fine sugar in the blender to make powdered sugar for cupcake icing - that turned out pretty well, in the right proportions. using baking powder with potato starch in pancakes, however - totally gross. but we did also recently find marshmellow fluff at whole foods that is apparently just right and has no corn syrup. also big at whole foods - sodas made with cane juice instead of corn syrup. the lesson here is that whole foods offers hope in these desperate times.

i dont know anything about how gluten intolerance works, but i bet if you go wandering around whole foods reading all the ingredients on everything, you might find a few replacement items, or replacement ingredients, so you could enjoy a few of the things on your list. plus, great excuse to spend a few hours in whole foods. i mean, arent there other kinds of flour you can use to make roux? or anything else for that matter?

[Phc]

If you didn't have kids, there would be no reason to go on. That is horrible; I am mourning for you.

Truly, what kind of world doesn't have cake? What a terrible, terrible thing.

But at least there's still burritos.

[Victoria]

I have two kids who are gluten intolerant too so while there are some things that we do without, we have found substitutes for most.

You didn't ask for suggestions but for important things that you cannot give up (like your mom's cake!), I would try a really good dietary enzyme designed to break down the gluten. We like enzymes by Houston Nutraceuticals (houstonni.com) especially AFP Peptizyde. It really works.

And, there are many premade substitutes for the things you have listed, even the Oreos (by Mi-del), cake mixes, gluten free breads and cinnamon rolls at Whole Foods (freezer aisle) etc. Many mixes, breadcrumbs, and non-wheat flours at The Gluten Free Pantry online. Not the same as WonderBread toast but I hope this helps.

[shayneegray]

I'm just stopping by to empathize and perhaps offer some encouragement. I'm positive for latent celiac disease and am still figuring out how much gluten (if any) I can handle in my diet. Several of the things you enumerate are tough to replace, but others actually have decent substitutes. I recently found a gluten-free bakery in my neighborhood that makes great muffins and scones. I honestly would not have known they were wheat-free if I hadn't been told. They were moist and not too dense and mmmmm... I also sampled a good cupcake there. My recommendation would be to avoid bean flour--all the baked goods I've had with a lot of bean flour have been gritty and too earthy. Rice and potato flour, however, seem to work well, especially when supplemented with a bit of xantham gum. I baked a gluten-free banana bread yesterday (my usual recipe, just substituting flour types and throwing in the aforementioned gum) and it was great, only slightly different from the usual outcome, a bit less sweet. I've also found tamari to be fine instead of soy sauce.

That being said, there are a few things that can't be matched: bahn mi (decent gluten-free French bread is nonexistent) and pastas. When it comes to dim sum I just suck it up and eat--I can't let that go entirely.

Well, that was longer than I intended it to be. Feel free to e-mail me if you want other thoughts about gluten-free foods. I hope you can still find foods that satisfy your cravings. I imagine you will, once you get over the shock of losing some dear gastronomic friends.

[Lala]

my heart breaks for you. If someone took away my Dr. Pepper I would be in hell.

[mc]

Shoot, Kate beat me to the mention of Gluten Free Girl (glutenfreegirl.blogspot.com). She's got all kinds of fantastic recipes. I know exactly what you mean about the loss of identity through food, though; I dealt with it all summer through the (thankfully temporary) elimination of dairy that it turned out Ess wasn't allergic to anyway. What, me not eat pizza? You've got to be kidding.

[Brooklyn Mama]

Oh, man, Moxie. I can't even imagine. So sorry. I'd be mourning too. (But there's always chocolate!!)

[Nikki]

This is sort of funny, but I've never been able to stick to a diet until I had to give up wheat! I'd manage low fat for a month, or give up candy for Lent, but nothing ever stuck until I had to give up wheat. And I was the girl who ate a basket of deep fried bread for breakfast every day when I visited England.

When I first started having problems with wheat, someone told me that her friend (who didn't have celiac) was able eventually to eat wheat again. I thought she was full of shit.

But after two years wheat free I've found I have been able to tolerate small amounts of wheat. I can't eat it at every meal, but I can have it at one meal a day. Or maybe just a soft pretzel for a snack. But my symptoms were different: gassy, bloated, and a sharp knife pain in the gut.

[rabi]

have you ever been to babycakes?
http://babycakesnyc.com/

the prettiness helps a lot, for some reason.

[Ally]

Ah, it sucks. I had to give up sugar and all white grain products - flour, pasta, rice, etc. - for years and years.

[Katie]

Oh Moxie. The thought of having to give up any food makes me quiver. I can't believe it. I'm just going to be sympathetic for you, and note that it seems like you got some great resources here from people. If I see anything, I'll let you know.

[Spacemom]

As a baker, I would be very sad to give up wheat, but there is hope. Check out King Arthur Flour. They have many gluten-free recipes and items and links to gluten free websites!

[Kate W.]

Are you kidding!!?? Tell me you can have wine-please say it's ok or you are going to have to go to Plan B!

[Susan]

And salad dressings (some have wheat in them) and french fries (some are tossed in flour before being frozen).
BTW, my aunt with celiac disease swears by garbanzo bean flour as a substitute to wheat flour. And she is a vegetarian for whom carbs are food of the gods.

[Rebekah]

Wow, I very much understand feeling the need to mourn giving these foods up. I would too! Forget how great they taste, there's also the connection we carry to wonderful memories and family gatherings and COMFORT. That is a loss that shouldn't be downplayed.

How wonderful to get some of the links and alternatives you've been offered here, though. I hope that you find them to be helpful and satisfying!

[Menita]

Oh this post HURTS. How could I live without croissants? And cupcakes? I'll shut upt because this isn't helping you, but oh the pain. I do hope you find something yummy and satistfying.

[Brooke]

Tamari is wheat-free, so soy sauce isn't a total loss.

Also, cake is easy to make gluten-free since cake flour is specifically low-gluten.

That said, I'm sorry.

[JennyK]

Oh how sad. Good luck to you making this change. I would die without feeding my daily Coke habit -- please note I'm referring to the soda.

[wavybrains]

I've been gluten free for nearly four years now. The first six months are the hardest. I find that I can tolerate miniscule amounts of gluten like a drop or two of soy sauce but anything else brings on symptoms. Now, it's like old hat to me--eating out kind of sucks, but there are many, many options--and you live in NY which actually has gluten free bakeries! And tons of ethnic resturaunts (curry, thai food, rice etc). You can even have Pizza--Amy's Kitchen has a frozen Rice Crust Pizza that is yummy yummy. I like the Pamela's brand of gluten free baking mix. Get the Gluten Free Gourmet cookbooks from your library to get inspired. You'll be feeling less deprived in no time! And Gluten Free Girl does indeed rock--her fig bars (fig newton subsitutes) are to die for. http://glutenfreegirl.blogspot.com You can do this!

[SheilaC]

My brother and my sister have both tested positive for celiac recently. I have been gluten-free at several times in my life, like for a year after the kids were born. But for some reason I am not celiac according to the blood tests. Still, I know how tricky it is to find or make good safe foods, and how those cravings stick with you.

The more you shop the health food places, the more products you will find, and many of them are pretty good. I was astonished at the range of things my sister and brother had in their GF stash this summer at the cottage. They found some terrific crackers, desserts, breakfast foods etc. They even found a wheat-free soy sauce.

You probably know about www.celiac.com and others have given you some great websites. I hope it will get easier, and happier for you, as you get through this learning curve. Happy taste-testing!

[rachel]

haven't read all the other comments, but Coke & Dr Pepper are fine - the caramel color is usually from corn in the USA.

La Choy is gf. Chebe makes a cinnamon roll mix that is fabulous. and MiDel makes great oreos. I have some great recipes (including a chocolate cake filled with mocha ganache) on my recipe site - http://skylane.kjsl.com/~imacmom/recipeblog

We've been gluten and dairy free for 3 1/2 years now. I've come up with amazing tasting substitutes for just about everything (except twizzlers and shumai and ravioli). Feel free to email me - I've gotten really good at adapting recipes.

good luck with the learning curve - to ease it my top suggestion is to go buy Carol Fenster's book "Cooking Free" - I've never had a failure from her cookbooks.