Welcome to the new you!

May 12, 2008 4:51 PM

Ten days ago I learned I have a celiac disorder. I have lost almost 15 pounds and my eating patterns have drastically changed. Help me fill the void...

My doctor confirmed the week before last that I have a celiac disorder, and to cut out gluten, barley, and spelt.

The first week of this was spent mostly at work. Which consisted playing the game of "Can I Eat This...I Can't Eat This". By last Saturday, I had gone from the 221 pounds I weighed at the doctor's to 209.5 on the scale in my house.

My diet is now extremely restricted. But, I am very worried about replacing the carbohydrates that I can't eat with meat protein because I don't want to see a jump in cholesterol. I also feel like some of defenses have gone: on Sunday I ate out to celebrate a friend's birthday and had a very bad reaction to an omelet. It was bad enough that I had to call in sick. I am now down to 207 pounds and I feel very weak and my clothes are not fitting very well.

I already cannot eat a lot of spicy food and I feel like I am doomed to a bland diet. I can't eat tomatoes, eggplant, cheese, beer, whiskey, chocolate, many things.

However, my acid reflux has totally gone away, so this is working and I am going to stick to it.

Any advice or help dealing with this Big New Reality would be helpful. Also, salad dressing recipes...

posted by parmanparman to food & drink (29 comments total)

While not celiac, I was diagnosed with a fat stack of "food sensitivities" a while back and I got a lot of really good advice out of my AskMe.
posted by heeeraldo at 5:01 PM on May 12

I'm not celiac but have a good friend who is. A couple things she has done are:

- Invest in a bread machine so you can make your own bread with rice flour or other gluten-free ingredients

- Learn to love Strongbow cider - It's a good alternative to forbidden beer when you're out at the pub and want a drink

- Check out http://glutenfreegirl.blogspot.com for recipe ideas
posted by sanitycheck at 5:04 PM on May 12

- Learn to love Strongbow cider - It's a good alternative to forbidden beer when you're out at the pub and want a drink

I also cannot eat apples or apple juice.
posted by parmanparman at 5:06 PM on May 12

Seconding the recommendation for a bread machine and a good recipe for rice flour bread. The gluten-free bread you can buy at health food stores isn't worth the (high) expense.

To satisfy my chewy-cookie craving, I go to an Asian food store and buy treats made with mochi (rice) flour. Read the ingredients to make sure there's no wheat flour. If you're looking for carbs, daifuku will give you plenty--there are 300 calories in one wondrously chewy bun.
posted by PatoPata at 5:16 PM on May 12

Check out the blog Gluten-Free Girl. She's got a ton of other gluten-free blogs listed on her blogroll, and a few great recipes for salad dressing. Here's one for avocado ranch. One of the nice things about this blog is that it's not just dry stories about eating gluten-free and gluten-free recipes, you really feel like you know Shauna through her stories -- her personality really shines in her writing. Plus, she's a great photographer.
posted by k8lin at 5:17 PM on May 12

Oh, how terrible. I'm so sorry you're feeling crappy.

I don't understand something, though. Why can't you eat tomatoes, eggplant or cheese? Celiac is about gluten intolerance, right?

Here are a few lists of safe and unsafe foods. Oh, and safe alcohol. I'm really sorry about beer. But you can do Maker's Mark, it looks like. And Scotch.

On preview, is there something other than Celiac going on? Apples? Maybe I'm misunderstanding celiac.
posted by Stewriffic at 5:17 PM on May 12

can you eat rice? rice pudding is a great alternative to ice cream, and you can flavor it with berries, chocolate chips, a swirl of dulce de leche--it's not just cinnamon and raisins.
posted by thinkingwoman at 5:19 PM on May 12

NFCA (National Foundation for Celiac Awareness)

Tons of gluten-free books/cookbooks. Bette Hagman is especially great.

There are also loads of blogs devoted to being gluten-free. I saw Gluten-Free Girl touted up above, and while I know she's inspired many people, she certainly won't be useful to you with regards to your protein intake. Also, if you're not ready for "YAY! I'm so happy I'm gluten-free!" hers may not be the website for you.
posted by cooker girl at 5:24 PM on May 12

Perhaps a bit more info would be helpful - (I'm a noob, so apologies if you have explained your history in other threads) I take it you had a biopsy to diagnose the coeliac? Did you also have the ELISA test done? What were the foods that came up as 'reactive'? Is your doctor putting you on a total elimination diet? Have you had more than one ELISA exam? (depending on who you ask, the test has a rather high rate of false positives).
I had an ELISA in January, and my doctor wanted me to do a total elimination diet for: wheat, barley, oats, rye, dairy, cheese, eggs, soy, and garlic (that one really threw me). Since I'm already allergic to most nuts and all fish, such a diet would have left me with a fairly limited diet, and if I adhered to the garlic rule, pretty much rule out any restaurant. We compromised on a reduction diet - I have wheat/ dairy/ soy products once or twice a week, and have made an effort to eat more veggies and to eliminate garlic from home-cooked meals.
If you can still take soy, I would really recommend soy protein shakes - they were in single-serving cartons, and really helped me through my adult tonsillectomy (I could barely eat anything). Beans and grains like quinoa are good for protein (and so is amaranth, apparently, but I didn't like it at all). I can give you other suggestions (I've become a polenta fan -- it's substantial without the gluten), but it would really help to know what foods you've had to eliminate/ reduce.
posted by queseyo at 5:25 PM on May 12

Celiac runs in my family, so does spicy foods, I'm getting a disconnect here.

Avoid anything with modified food starch in the ingredients.
posted by Max Power at 5:33 PM on May 12

Can you eat potatoes (related to tomatoes and eggplant)? Rice? Beans? Nuts? Soy? All these are good carb and/or protein sources on a GF diet. How about the onion family? These form the basis of lots of complex, savory soups and other dishes.

There are a million specialty flours you can use for breads and cakes. Rice flours, nut flours, bean flours, sorghum, buckwheat, tapioca, potato starch, etc. I don't like the bean-flour-based mixes at all; they have this acrid, metallic taste that drives me nuts. But it doesn't bother others in my family, so YMMV.

Are you supposed to avoid wheat-based vinegars? If so, wine and rice vinegars are good places to start for salad dressing. You'll have to take a close look at all your condiments - ketchup, mustard, mayo - most commercial brands have grain vinegar. Unfortunately the GF condiments usually substitute cider vinegar.

Non-spicy does not have to mean bland. You can do a lot of great savory stuff with fresh or dried herbs. Wheat-free tamari (soy sauce) is also good for flavor.

If you have a Whole Foods near you, their house brand has lots of GF options. Check out the frozen section for bread, pizza crust, etc. But these are expensive prepared foods which are best used sparingly if you're on a budget.

They also carry the GF flours and condiments. You may be able to get things cheaper at a different natural food store, or online in bulk. And a bread machine will keep you in sandwiches for much less than commercial GF breads.

I wouldn't worry too much about substituting meat for carbs, as long as you focus on quality lean cuts and don't fry everything. And make sure to keep up with the leafy greens.
posted by expialidocious at 5:34 PM on May 12

I am not celiac, but my friend has atypical celiac. Her blog is here, and she also links to lots and lots of other people who are in the same (and/or worse) boat. She has been dealing with this for a good while now and frankly, I love her food and would eat it every day, and I dont have a single food allergy. Take a peek, if you think that you want to contact her, do that - she's open to that kind of thing and loves talking with people living with these restrictions. She's had to cut about 90% of the typical American diet, FWIW, so she's gotten pretty good at this.

Good luck, it's rough, but if you want to you can eat really well. And you will feel so much better!
posted by Medieval Maven at 6:13 PM on May 12

Make friends with your local health food store and whole foods, who are more likely to carry a wider variety of gluten free foods that might help fill the void.
posted by thedanimal at 6:14 PM on May 12

Bette Hagman is especially great.

I'll second this; the pizza dough is sublime, especially when made in seasoned cast-iron.
posted by Blazecock Pileon at 6:15 PM on May 12

Blazecock Pileon: I'll second this; the pizza dough is sublime, especially when made in seasoned cast-iron.

I recall my friend reseasoning all her cast iron after she was diagnosed; it's very porous and a possible source of gluten cross contamination.
posted by peep at 6:28 PM on May 12

I don't understand something, though. Why can't you eat tomatoes, eggplant or cheese? Celiac is about gluten intolerance, right?

Here are a few lists of safe and unsafe foods. Oh, and safe alcohol. I'm really sorry about beer. But you can do Maker's Mark, it looks like. And Scotch.

On preview, is there something other than Celiac going on? Apples? Maybe I'm misunderstanding celiac.


No, I agree. It looks odd on preview. I had the ELISA test which confirmed celiac. In 1994, I first started taking anti-acid reflux medication (it tasted of bubblegum); in 1999, I was told "Don't eat chocolate - lose weight" and went down to 180 before going back up again. In 2007, I was told "no acid producing foods: apples, apple juice, strawberries, citrus, eggplant, etc." It's not been the most sublime journey.
posted by parmanparman at 6:44 PM on May 12

Look to cultures that do not rely purely wheat, gluten products. Going gluten free is easier knowing you can go Chinese, Japanese or Vietnamese. Plenty more cultures pairing rice with a tasty dish or two that has no wheat, eggplant nor tomatoes. As an example, banh xeo or sizzling Vietnamese crepes uses rice flour, potato or tapioca starch and stuffed with shrimp, bean sprouts and lean pork. Look to quinoa salads as well.
posted by jadepearl at 7:11 PM on May 12

So, how many times have you had the ELISA done? Is the doc recommending you avoid "apples, apple juice, strawberries..." because they are reactive on the ELISA test or because they are acidic foods that are ostensibly aggravating your acid reflux?
posted by queseyo at 7:18 PM on May 12

Is the beer restriction a recent thing, due to celiacs? Or was this a pre-existing restriction? I ask this because my grandmother was diagnosed with celiacs sprew over three decades ago, and as such my family had become quite innovative in our cooking when we are with her (for instance, I made these delicious butternut squash ravioli with gluten-free flour, and they were spectacular). Recently (and much to her pleasure) we discovered Redbridge Beer, which is made out of sorghum - and therefore acceptable to gluten-free diets.

Here are other carbohydrate staples in my grandmother's diet:

• Tinkyada gluten-free pastas (they hold up much, much better than other rice pastas, and generally don't become a gelatinous mess like the rest).


• Bob's Redmill products (for baking, pancakes, etc.)


• Rice. So. much. rice. But this also means Risotto!


• Real and actual potato vodka (most are made from grain these days). Blue Ice vodka is made exclusively with potatoes, so it is safe for those with celiacs (my grandmother, however, prefers rum).
  
• Corn tortillas. These can be wrapped around hot dogs, used to make 'wraps,' basically as a flat substitute for breaded goods. Cornmeal is also rather calorie-dense, so this may help out with the weight-loss issue.

Also, do you have a Wholefoods near you? If so, I suggest checking out their Gluten-free Bakehouse for some delicious pre-made baked goods.

The easiest way to address a restrictive diet is not to shift your entire diet completely, but to find satisfactory substitutes for those things you used to eat but now cannot. Finding a good gluten-free bread that you can enjoy as you would any other bread will be a huge boon to your eating habits. As mentioned about, your local health-food store or co-op ought to have a fair selection for you to try out.

And one last tip: whenever we've gone out to dinner, my grandmother has brought a bottle of La Choy soy sauce with her. The reason for this is that the majority of soy sauce today is made out of wheat, and it is used often in many forms of cooking to add depth to certain dishes. Bringing her own soy sauce, and sending it back into the kitchen for the chef to use (it helps if you trust the restaurant) allows for greater culinary flexibility, and fewer culinary restrictions.

I'm sorry that this has sprung up on you. It can seem like a chore at first, but soon enough it will just become part of your daily routine. Good luck!
posted by numinous at 7:24 PM on May 12

Carbohydrate wise: eat quinoa and eat buckwheat. Both are great and can be used or substituted into a lot of recipes!

Salad dressing: tahini+miso+lemon juice (or, cheaper, panut butter + soy sauce + lemon juice) is really good.
posted by mustcatchmooseandsquirrel at 7:40 PM on May 12

Ah! I missed the part about the salad dressing. I'm not sure if you can have these per your acid reflux, but these are two dressings that I alternate whenever I make a fresh salad, and are incidentally acceptable for those with Celiacs.

Fresh Garlic and Lemon dressed salad - this dressing is light, delicious, and rather refreshing. It is my all-time favorite, and never fails to impress. People are always SHOCKED that it takes so few ingredients!
Ingredients:
• 4 cloves garlic
• 1/2 meyer lemon, cut into wedges
• 2 - 4 tbsp olive oli
• salt & pepper
• romaine lettuce, 1/2 head, chopped
• 10 cherry tomatoes [optional]
• add'l veggies if desired

Step 1: Chop up (do not mince!) garlic into small pieces, but big enough that they don't escape through the tines of a fork. Put chopped garlic into salad bowl.
Step 2: Add olive oil. Stir garlic and olive oil together.
Step 3: Take fork, and press the garlic against the side of the bowl until the garlic releases some of its essence into the oil. Do this several times, until at least 1/2 of all the garlic has been pressed.
Step 4:
Step 5 [Omit this if you cannot eat tomatoes]: Cut cherry tomatoes in half, place face down into the garlic/oil, and smoosh down with your fingers until the tomato bleeds its juice. Do this with all of the tomatoes.
Step 6: Add lettuce (+ add'l veggies), and toss until it is well coated.
Step 7: Squeeze lemon wedges over entire salad. Toss again.
Step 8: Add salt & pepper to taste.
Step 9: Concede defeat and opt out of preparing anything else, because this salad is crazy delicious.
* * * * * * *
Arugula salad with Sesame Vinagrette - my grandfather used to make this salad for my grandmother when he'd cook, and it has become a family recipe:
Ingredients:
• 1 tbsp toasted sesame seed oil
• 2 tbsp seasoned rice vinegar
• 2 1/2 c. arugula
• 1 handful of raisins (substitution: mandarin orange slices)
• 1 tsp toasted sesame seed
• salt and pepper

Step 1: Put washed arugula into salad bowl.
Step 2: Pour oil and vinegar over arugula and toss.
Step 3: Add salt and pepper to taste. Toss.
Step 4: Add toasted sesame seeds. Toss one more time!
Step 5: Sprinkle raisins over top of salad.
Step 6: Serve and enjoy.

Mmmmmm.
posted by numinous at 7:55 PM on May 12 [2 favorites]

Disclaimer: I do not have celiac disease. A friend of mine does, and I went on a strict elimination diet while nursing - no dairy, soy, wheat, eggs, fish, shellfish, tree nuts, peanuts, corn, chocolate, or coffee. That's the full extent of my expertise. Some of the below is stolen from one of my previous comments.

Obviously you can google "newly diagnosed" celiac disease so I won't provide links, but they are out there. Boards and forums are very active.

I found it easier to make a list of everything I could eat, and work from it. Literally write it all down. For you this might look like (for any prepackaged foods you would still need to check for hidden gluten, of course):

Any fruit - don't forget dried fruits, including raisins & apricots [you know your own exceptions here]
Any vegetable, including potatoes, sweet potatoes, yams, corn and a lot of corn products
Any meat or fish (maybe for now, as you adjust to the gluten free diet, don't worry about meat, except for making sure it isn't injected with any solution that might contain gluten)
Any oil - drizzle it on potatoes and sweet potatoes
Rice, and rice derivatives - rice pastas, rice flour, rice milk, rice breads. Rice can get boring, but there are so many varieties. Short grain, long grain, brown, basmati, jasmine.
Any beans and lentils - make and freeze soups for quick meals
Any nuts, including nut butters
Any soy product, including soy milk and fake meats
Dairy - milk, butter, some cheeses (does your inability to eat cheese come from the reflux? Might those problems resolve themselves once you are truly gluten free?)
Eggs (did you think your sickness after the omelet was the egg itself? It could have been cross contamination, too)
Oats - Bob's Red Mill has certified gluten-free oats
There's more; again I'm not an expert. Plus there are so many specifically gluten free products like cereals, breads, snacks, etc.

I had a routine/template for each day and that worked for me: breakfast was the same thing every day: Oatmeal with brown sugar, plus a fruit.

Snack was a fruit, air-popped popcorn, a rice cake.

Lunch was either: a salad with meat or bean soup, plus one other veggie.

Dinner was chicken or turkey breast with potatoes or rice, plus another veggie and fruit.

It sounds boring, but this was just the template. I had different varieties of potato and rice to work with, different parts of the chicken, endless fruits and veggies, different cooking techniques. I could still make homemade french fries!

I hope you feel better quickly and fall into a system that works for you.
posted by peep at 8:28 PM on May 12

I made a cookie recipe called The Chewy Gluten Free from Alton Brown. I like them so much I have even made them for others and they can't tell what is different. I highly recommend them.

Also, most large grocery stores now have lots of mixes to create gluten-free items. You are not stuck to a bland diet. Just check packages. For instance, I know that you have to be careful with chips because some manufacturer's blow things into the bags that can cause problems with celiac's, but my friend with celiac's can eat Doritos Cool Ranch without a problem. Also, she can eat ActII microwave popcorn, but not others.

Take your time and grab the list of safe foods from places like Celiac Food Reviews the Celiac Pocket Guide.

Good luck!
posted by mcarthey at 8:58 PM on May 12

Don't eat out unless you can chat to the chef and explain the situation. Surfaces, ingredients and utensils can all fuck you up.

Even if they seem to cater to your needs be wary!
I worked at a cookie place, they would place greaseproof paper on the trays before putting a batch of gluten free cookies down on it. Great, right? Wrong!

When they were finished the paper was stacked ONE ON TOP OF THE OTHER then ROLLED UP and chucked in an OPEN BOX UNDER THE BENCH. I don't know why they bothered. Like you're not going to notice that your 'gluten free cookies' are contaminated with wheat!! And lets face it the choices are limited so if you find something you can eat - you're going to eat the shit out of it... bastards.

They wouldn't be the only ones so be careful.
posted by mu~ha~ha~ha~har at 10:15 PM on May 12

I had almost exactly the same experience as you did. I cut out gluten and a really severe, decade-long case of acid reflux (that was refractory to twice-daily proton-pump blocking medication) disappeared literally overnight, along with a bunch of other things I had ascribed to "getting older."

I then lost a lot of weight - 40 lbs overall. Wasn't heavy to start with; now I'm skinny. And let me tell you, the first time I had a significant amount of gluten after being off it for a couple months - that was a real kick in the pants. I was sick for 3 days.

Let me give you my semi-medical but mostly personal-anecdotal opinion: this illness screws up your bowels and lots of other organs in ways that take months to fix. Give your body the time it needs to heal before you start micro-analyzing everything that it's doing.

As far as the game of "Can I Eat This," you will lose it regularly. To a first approximation, gluten is in everything, including a large number of things that don't list it on the label (because of contamination at the factory, is my best guess.) You will learn to hate the waitress who picks the croutons out of your Caesar salad when you ask for a crouton-free salad, instead of plating you a new one that's never touched bread, because the crumbs she leaves behind will make you ill.

Did you know you are done eating fast food? Well, you are. All fast food contains gluten. So you're done with that forever.

Any more I only know I'm safe when I made the food myself. I am trying to do that as often as possible. It kind of sucks, but it sucks less than being glutened all the damn time. I have yet to gluten myself accidentally with food I've prepared.

Don't worry about the cholesterol; let the blood test tell you what happened. My cholesterol dropped from 240 to 189 when I cut out gluten, despite the fact that I was eating red meat every day for the 3 months prior to that blood draw. I have no explanation for this; I was expecting it to be 500. All I can suggest is don't second-guess your body; if you want to know what a certain diet does to your cholesterol, get it tested. And relax in the knowledge that a diet that doesn't make you sick is probably healthier, overall, than one that does.

Here are some things I've found:

Dragon's Gold beer by a company called Bard's Tale. It's sorghum-based and drinkable, not great.

Tinkyada pasta - the spinach pasta actually has a flavor, so I recommend that. Their plain pasta is sort of bland - you can definitely O.D. - and the corn pasta I had was simply not pleasant to me. Use strongly flavored, thick sauces for a better effect.

Bread: the only bread I've found worth eating was from Grindstone Bakery. I have given up on other breads; rice bread, soy bread, chickpea bread, potato flour bread - all nasty stuff made with xanthan gum that falls apart back into flour in your mouth because it can't develop. Don't eat that crap. It's horrible and it will make you cry.

Spelt: it sets me off just like wheat does. I avoid it completely because it is poison to me.

Rye: You didn't mention it, but rye also has gluten. Avoid. Rye whiskey is OK.

Oats: Most of them are contaminated with gluten, and some celiacs cross-react to avenin (oat gluten). I had to cut it out.

Gluten-free Girl: I tried to love her, but I am afraid I find her personal style a little bit fatuous. I wouldn't warn anyone off, though. She definitely didn't give up gusto with the gluten and she is definitely an advocate.

Living Without magazine. It's nice to just not be alone in this, you know?

Point Reyes Blue. Most blue cheese contains wheat in the starter. This doesn't. It's fantastic on the Grindstone bread I linked above.

Injera: You may be able to find an ethiopian restaurant that uses 100% teff in its injera, or if they don't, they might do it on special request. I haven't tried making my own injera yet - teff is really expensive - but it's on my list of things to try.

Check labels and websites. Get to know the things that mean 'gluten.' And don't be afraid to tell your waiter that you can't eat gluten. I am always a little ashamed to mention it - before this happened to me I hated 'picky eaters', felt they were somehow morally deficient, because it is Man's birthright to eat of all of the Earth's bounty - but I've never even had to explain to a waiter what it means, and they're always super nice about it. (They're not always right, even when they check with the chef, though; if you think something probably has gluten in it, don't bother asking, just skip it.)

For desserts, I am mostly stuck with flan, custards, ice cream, and creme brulée. It's not so bad. You get used to it.
posted by ikkyu2 at 11:52 PM on May 12 [4 favorites]

Several years ago I read the book Unraveling the Mystery of Autism in which the author apparently cured her son of autism by taking wheat and dairy out of his diet. Most of her recipies, therefore, are also suitable for celiacs. She includes several recipes in the book including breads and cookies that even non-autistic/celiac members of her family loved. Might be worth checking out at the library.
posted by bluekrauss at 5:11 AM on May 13

One thing that helped me (I have celiacs) is that I bought a belgian waffle maker (in your household dedicate it to wheat-free, don't let anyone cook wheat waffles in it). then I make waffles from a regular waffle recipe using bob's red mill brown rice flour. I like the waffles with peanut butter. I think the nutrients from peanut butter kept me alive before I was diagnosed. Also, you can use the waffles like bread for sandwiches later.
posted by cda at 5:26 AM on May 13

OP, am I correct in assuming that you're eating many fewer carbs now than pre-diagnosis? If so, the sudden weight loss and general crappy feeling may be caused by using up your glycogen; eating more carbs (or a lot more calories to support gluconeogenesis) may help you feel better and gain back some of the weight.

(IANAD, I don't have celiac, but I know the rapid 10-pound weight loss and run-down feeling of starting a low-carb diet quite well.)
posted by backupjesus at 6:34 AM on May 13

Don't worry, your life is not over. I just hosted my first gluten-free potluck for about 20 people Saturday night and it went great.

For restaurants, Thai, Vietnamese, and Indian are often really accommodating since everything is pretty much gluten-free to begin with.

Quinoa is delicious and fast to prepare (don't forget to rinse). Rice is great, experiment with different kinds. Rice past is alright, alright a bit sticky. Don't forget about Asian rice noodles too. I prefer corn pasta to rice pasta, for the texture. Make sure you get uncontaminated oats. You can also fill up on corn, potatoes, sweet potatoes. When baking, I find that things like corn bread or carrot cake are a lot easier to replicate than vanilla cupcakes, for example, which depend a lot more on wheat for their taste.

I eat lots of stir fries, pasta, eggs, curries, bean salads, hummus, salsa, cornchips.

Here are a few of my favourite gluten-free resources:

Gluten-free Goddess - gluten-free blog
Book of Yum - vegetarian and gluten-free blog
101 cookbooks - not completely gluten-free but many of her recipes are or can easily be adapted
Fatfree Vegan Kitchen - this sounds disgusting, but I've found a lot of good recipes on here.
Gluten-free Baking Classics - Annaliese Robets
Complete Gluten-Free Cookbook - Donna Washburn & Heather Butt (they have other cookbooks too)
posted by carolr at 6:42 AM on May 13