Warning: This entire post is one long sustained pity party. Read at your own risk.
Last night was a typical Wednesday night. I took my younger son to hockey practice (yes, I am a “hockey mom;” shoot me now, please!) and it runs too late for me to be able to cook dinner and have it on the table before his bedtime–so I planned to pick up fast food of some variety or other on the way home. As I knew that I would be unable to eat any of said fast food, while he was practicing I nipped over to the organic grocery store–Wednesday night is my night to go there, because it’s in the same city as his ice hockey rink. The town I live in, and all the surrounding towns for about a twenty-mile radius, do not have organic grocery stores.
Whoa, back up–unable to eat fast food? That’s a li’l strong, isn’t it? Not grossed out by fast food or morally opposed to the artery-killing nature of fast food–really unable to eat it? How bout if I were starving in a desert and somebody offered me a Big Mac, how ’bout then, huh?
Nope. About eight months ago, I was diagnosed with Celiac disease. In case you are fortunate enough to have no idea what that is, I will enlighten you:
Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley.
When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats. Celiac disease is both a disease of malabsorption—meaning nutrients are not absorbed properly—and an abnormal immune reaction to gluten.
Note: This is not a food allergy. Should I ingest a product containing gluten, I will not go into anaphylactic shock and need to be rushed to the hospital for emergency life-saving treatment. That is the more positive aspect, if there can be said to be a positive aspect. Generally, any rushing post-ingestion by me involves only my feet and the nearest bathroom. The damage over the long term is the more significant issue–it can get very ugly, and most of us with Celiac disease go undiagnosed for years. Generally, we end up only seeing a doctor when it’s gotten to the point that we are doing stupid things like starving ourselves to avoid the always miserable consequences of eating anything at all and our friends and loved ones threaten us with involuntary committal on suspicion of anorexia. (On a side note, while the Celiac test does involve an intestinal biopsy, doctors can and do use the upper bodily orifice route, not the lower one. Or I might’ve never gone through with the testing at all. Clearly I’m no Katie Couric.)
However–let me flesh out the above definition of what I can’t eat. Wheat, barley and rye already sounds pretty restrictive, huh? Goodbye all breads, cakes, cookies, pies, pasta, cereal and granola! Oh, but that ain’t the half of it. That’s about a third of it, actually. The second third is as follows, with a brief explanation as to the whys if it ain’t already obvious:
FORBIDDEN:
beer, whiskey, vodka, gin and any other liquor made with any grain product
anything, meat or vegetable, that has been breaded
brown syrup (frequently made using barley)
couscous
malt or malt flavoring (usually made from barley)
matzo
soy sauce (frequently fermented with wheat)
stuffings
Ooh, that IS a lot! But there still seems to be a pretty fair amount of food I can eat, right..?
FORBIDDEN:
premade bouillons and broths
creamed or breaded vegetables
dry roasted nuts
gravy
canned, jarred or frozen sauces, including tomato sauce and marinades
imitation crab or other seafood
lunchmeat, including hot dogs
nondairy creamer
canned or jarred salad dressings
seasoning blends
packaged commercial herbal teas and coffees
canned soups
soup mixes
canned or jarred spreads, dips or soft cheeses
yogurt
Or not.
Good God! one might shout. Why can’t you have any of those?!
The answer: Modified food starch. MFS for short, because I can have so much more fun with it as an acronym. I don’t even have to reach for creative inspiration!
What is modified food starch? It is a rendered form of wheat, used as a thickener, as a formulation aid to help maintain a desired food texture, as an anti-caking agent to keep powdered foods free-flowing, and as a humectant to maintain a food’s water content. Now, it can be made from corn–but too often, it’s made from wheat. And it is in everything at a standard grocery store. EVERYTHING!
So, I cook a lot. From scratch. Using gluten-free flour and stocks every time, from the organic grocery store which is the only place that sells them. I used to enjoy cooking and I even used to enjoy cooking from scratch, but I enjoy it a lot less now that I have to do it every day. There is a small selection of gluten-free ready-made products at the organic grocery store in the somewhat-neighboring city–I stock up once a month, but frankly, everything there costs about five times what its wheat-contaminated standard grocery store counterparts do, and as I said before, it’s a bit of a drive to get there.
And sometimes I slip. It’s hard to never get to have any of the pizza on the kids’ Pizza Night, for instance, especially if I’m out of gluten-free food that takes less than an hour to prepare. And nothing I do–no premade gluten-free bread that I buy, no gluten-free bread that I make myself–tastes even remotely decent. Gluten-free cookies, brownies, pasta–those do work pretty well. But not bread. Sometimes, I just want to eat a sandwich, a veggie burger, a cheeseburger…
I hear and read my vegetarian and vegan friends talk about their dietary restrictions and their occasional “slips;” though I’m neither of those things, I sure do get, now, something of what it’s like to be one, I think. Especially when they talk about restaurants and parties at friends’ houses and not knowing what went into making something but really kind of having to eat some of it anyway–meh!
Celiac disease just sucks.
I’m so very sad for you.
There are lots of fast foods you can fix. Most of the gluten free breads make great toasted sandwiches. We have grilled cheese and Jelly (yes, with jelly) and they are great. We get the frozen pizza crust (kinninnick brand for the bread and pizza) and add toppings and cook for 10 or 15 minutes. There is also Anne’s frozen mac n cheese. Yes most of that cost way more than normal food!! But it’s worth it to not starve on the nights you are too busy to cook. It’s also nice just to not cook some nights!!! I agree with you, I am sick of cooking and cleaning the kitchen!!
Sad
On the one hand, cooking a lot is really healthy and (for me) pretty fun. On the other hand, *having* to do something can suck the fun out of it pretty fast.
If you want, I once accidentally discovered a recipe for vegan, gluten-free French toast. I am reliably informed that it is awesome, even to egg-having, wheat-eating folk. Also, there are a lot of Indian breads that use only chickpea, rice, and lentil flours.
i know folks with the gluten allergy but celiac is new to me. and it sounds rough. i’m so sorry lisa!
no gravy*. damn.
*though i did nearly kill jesse taylor from pandagon with gravy once on accident. true story. so maybe it’s best left off the menu anyway.
Just got linked to your blog… I don’t know if this could help, but here in Canada, there’s a pizza chain called Pizza Pizza that sells gluten-free pizza, and my friend who have Celiac tend to eat there. Worth looking into for you?
Lord, I wish we had a gluten-free pizza chain here!
To anybody interested–the two ready-made food brands at the organic store that are gluten-free are “Glutino,” which isn’t very good most of the time, and “Amy’s;” not all of the latter are gluten-free, in fact most aren’t, but what is gluten-free is extremely yummy. Amy is, like, my hero.
I keep hoping Amy’s will turn it’s hand to some bread; seriously, I don’t know why, but gluten-free bread is not good. I have tried just about every alternative out there and yuck. Crumbly, tasteless, bleh!
Celiac disease is no fun at all. I knew someone who fell behind in school – they thought he had a learning disability, when in fact he was just deeply malnourished due to celiac disease.
Two words for you – rice and barley. Around here it’s not hard to find fast food based on rice, but you may not have that many teriyaki joints or pho places where you are.
Avoid rice-based pasta; it’s vile, it looks unborn.
If you are of British Isles ancestry, celiac disease is always a possiblity. Back in the past most of us could afford anything made out of wheat only on special occasions.
And watch out; there appears to be a genetic link between celiac disease and Type 1 diabetes, which probably isn’t a risk for you, but might be for your children.
I feel your pain. I’m a vegetarian and about 1 1/2 years ago I suddenly developed severe allergies to soy, tree-nuts, & peanuts. So with this trifecta of doom I know what it’s like to not be able to eat any prepared foods, or dine in restaurants. It’s a good thing I love to cook or I would have starved by now! In fact, I lost about 25 pounds after I was diagnosed, and no one seems to believe that it’s just from avoiding prepared convenience foods. It makes me crazy to hear people talk about their diet “slips” because like you, I just don’t have that option.
My tactic is to try and prepare large quantities of easy to transport food to bring with me to work & school, and to try to keep a stash of snacks wherever I can. I find it’s better if I make a batch of something on the weekend (or whenever I’m less busy) so that I don’t have to think before I pack my lunch for the day. I can just grab it and go and I avoid the stress of being out in public and hungry.
I also got a cookbook which was not all that helpful for me, but it might be worth looking at for you. It’s called the Food Allergy Survival Guide and it’s by Jo Stepaniak. Everything in it is gluten-free (and free of all major allergens). It has a bunch of recipes for desserts, a general baking mix, pancakes, pizza etc. Also, I discovered a company who makes nut, dairy, & gluten free baking products and snack bars, and that’s been helpful too. I went six months without eating chocolate until I found one that was safe! http://www.enjoylifefoods.com
That really, really sucks. Really.
I don’t know what I’d do if I had that. I could pretty much live on bread, I love it so. I could probably give up meat or nuts or even chocolate if I really had to, but bread? That just sucks.
Violet, spelt bread isn’t gluten-free, unfortunately.
I’m sorry to hear that, Lisa. I’m vegan and have a gluten intolerance, but I cheat occasionally (on the gluten-avoidance, mind). Heck, I work at Whole Foods, and I’ve still found it expensive and almost impossible to completely eliminate gluten from my diet.
Gluten-free bread does not work because gluten is what holds the bread together. Gluten is responsible for the texture we know as bread. Thus gluten-free bread will always disappoint.
I am sorry to be the bearer of bad news.
Ann,
Vegan and gluten intolerant?? Good God. Cuts of meat and dairy products are some the few things left that I can still fearlessly eat! I am amazed and impressed by your dedication.
Vanessa,
Thanks for the link and info!
Marc,
I can actually have gravy if I make it myself from scratch using cornstarch as a thickener.
also, I wanna hear that story.
Well, how do you know I was talking about spelt? Presumptuous, much?
:p
More seriously, uh, gluten-free banana bread (or non-banana bread, for that matter) should also work, since the batter is super-sticky. (I understand this position may be controversial.)
Vi,
I have had a lot of luck with making yummy gluten-free cakes, brownies and cookies, so I am thinking that banana bread would probably work well too. Also, I adore banana bread.
Oh, so you weren’t referring to the epic gluten free crepe fail / french toast win with your “accidental discovery?” ( – ;
Banana bread would probably work. It might fall apart, but it would probably still taste yummy.
Then again, gluten-free breads with eggs are probably less crumbly and might withstand french toast-ing a bit better.
I… might not have been…
Distilled liquor is actually OK (vodka, bourbon, whisky, gin, etc…). The gluten protein is removed during the process of distillation. Also, Budweiser makes a gluten-free beer that isn’t terrible.
http://www.celiac.com/articles/222/1/Gluten-Free-Alcoholic-Beverages/Page1.html
Um, oats? You can’t have those either I’m afraid.
I know this hell. I was there for three and a half years. You may find reading Shauna’s site, http://glutenfreegirl.blogspot.com/ helps, both with the food and the crap it makes you feel… and being in America she can maybe help you with resources, though it sounds like you’re dealing pretty well.
I’ve been back on wheat (only whole, with little fat in my diet, and for a long time restricted sugar as well) for months now, but I’m starting to get that odd tiredness again, and bloated and nauseous and all that good stuff… so yeah, I’m cutting down the wheat again. *sigh*
Good luck
what causes celiac disease ?
Celiac disease is a digestive condition triggered by consumption of the protein gluten, which is found in bread, pasta, cookies, pizza crust and many other foods containing wheat, barley or rye.
I have more bad news…As the disease progresses, even if you are following the gluten free diet, as recommended…you will discover that you will begin to become lactose intolerant, therefore loosing dairy as well…and you need to ask for gluten free lunch meats. Some of the meats in the deli section are already listed as Gluten Free, but watch for any products with “broth” injected…those are often thickened with flour. You will probably want to get your meat from a butcher shop, because they don’t use the red dye to make their meat “pretty”.
I was diagnosed last July (08), but wasn’t aware of the local support group until 3 months ago, so ask the doctor’s office that confirmed your diagnosis. They should be aware if there are any groups in your area. I’m surprised at what I’ve learned from mine. And get to know a pharmacist if you are on any medicine. Try to find one with internet access, because they may need to ask about the manufacturer’s process – they may use flour on the conveyor belt during the manufacture process. And check your vitamin…mine had MFS right in the middle of the ingredient list (Centrum). Switched to store brand that specifies gluten-free, and feeling much better. Good Luck… you definitely aren’t alone in the misery.
I am also celiac, and I have finally been able to bake bread that tastes GOOD, even to people who can eat regular bread. Look for the Glutino corn mix–they have a bread recipe that is super yummy. I also have the advantage of living in a city with several good gluten-free bakeries, but I won’t torment you with descriptions
Also, for cookbooks, try Rebecca Reilly’s Gluten-Free Baking. I have never had anything turn out badly from it.