Diagnosed with celiac (can't eat wheat)

I'm *HOPING* someone else has this here because I am completely and totally overwhelmed.

Apparently I don't have IBS or lactose intolerance ... I have celiac. (Celiac damages the small intestine which then causes the lactose intolerance, but in theory I may be able to have dairy after I stop eating wheat. Oooh, I might be able to have cottage cheese again! That's the good news, I guess)

I'm an athlete. Now I've just been told I can't eat ever again for the rest of my life: bread, pasta, oatmeal (gets contaminated from the processing, I've read), pancakes, muffins, waffles, crackers, pretzels, bagels, english muffins, toast, croutons, etc. etc. The list goes on and on and on.

I *live* for cereal. I *love* Grape Nuts. :( :( :( :( :( :(

Carbo-loading pasta dinners are out forever. So are pancake breakfasts. This stinks!

On the one hand I'm happy that it's not IBS because there's no cure or real treatment for that. But on the other, WHAT THE HECK AM I SUPPOSED TO EAT FOR CARBS?!?!?

Fortunately I'm going to be seeing a nutritionist. Unfortunately I'm not seeing one at this very second.

So, anyone else celiac out there? If so, please help. So far the Web sites I've looked at aren't very good, but I've only known about this for 2 hours.

(((OTG))),

It is good you found out and will be seeing a nutritionist. I do know there are a lot of support groups on Delphi Forums and Yahoo Groups, although I have no idea how good they are.

Hopefully your food outlook will improve with knowledge from others living with this and after seeing the nutritionist.

can you say RICE?
there's potatoes too.
I stayed on a diet for a year which had no wheat. (In the end i added sprouted wheat)
THIS is tough for Italians (where everything is pasta and bread!)
the first thing i let go of was cereal breakfast.

It is hard, it's a major cultural shock, but i know of two women with celiac disease, one is Hungarian, the other WASP.

Mimi

out of curiosity, would you mind telling me if you have type O blood?

I don't have Celiac, but I found out in Feb that I'm allergic to wheat (I had suspected it for a long time). It causes serious breathing difficulties and triggers asthma attacks, so as a racer I have eliminated it from my diet. And almost immediately I lost weight (which has more to do with the fact that I over-consumed pasta than than wheat is evil -- it's not).

Like you (and most Americans) I lived on pasta and bread. Somehow, I've been able to get enough carbs to continue to ride and race at a high level. The best substitute for me has been corn -- tortillas are great! Rice also works. Oats are good too. But I sure do miss beer and pizza and hamburgers (not the same without the bun).

If you have a Trader Joes or similar health food grocery in your area, you'll find a ton of substitutes for wheat pasta and wheat bread. I stay away from them but I know lots of folks who love them.

Good luck to you! Celiac isn't a death sentence. Once you've learned how to eliminate and replace wheat in your diet, I'm sure you'll start feeling much better.

And isn't it great to finally know what was wrong with you?

Velogirl, if it's not too much trouble, could you give me an idea of your sample menu for a day?

Ugh I hate corn by itself, but can tolerate it on the cob. But I do like tortillas. :D

I may not be able to eat oatmeal, either. My problems were a LOT worse when I was eating oatmeal every morning. I have read that the oats are "contaminated" because they are handled on the same equipment as wheat. Although it's possible I may be able to find some that are certified gluten-free.

One Web site suggested cream of rice. Looks absolutely awful but I guess I'll have to give it a try.

Don't know of a Trader Joes, but there are a lot of health food stores around here. And I bet Wegmans has a pretty good selection of gluten-free stuff. Better get out the wallet. I hear it's much more expensive.

Mimi, I am type O, but my aunt also has celiac and she's not type O.

thanks for the blood type info.
There was a movement a few years ago that got very popular. it was the blood type diet. And for us O's, wheat was verbotin. But there are a lot of people
still on that diet and there are LOTS of recipes on line for you to look for.
But I wouldn't try cream of wheat if I were you. It's made out of the same
stuff as white bread! WHEAT!

I forget why oats are bad too, I think they are too close to wheat genetically!

I know someone with Celiacs who makes her own bread out of non-wheat grains. It can be done.

I'm sorry! I have a friend of a friend who has been diagnosed with Celiac, along with her two children. When she first found out she was angry and frustrated, but over time she's accepted it and even turned it into a business. She started a company making gluten free desserts (and they are fabulous, mostly chocolate stuff). She even figured out how to make cookies using a blend of different flours. She also dropped about 30 pounds from her petite frame after discovering this, even while taking pastry chef classes. If you have a Whole Foods nearby, they have nutrition specialists (I don't know how certified they are) who will consult with you on things you can and can't eat within the store, highlighting gluten free alternatives.

Good luck!

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But I wouldn't try cream of wheat if I were you.

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Oops, I meant to type cream of RICE. :o

*one handed typing...so i keep it brief

celiac is not so bad at all...once you get used to the brands and all! my cousins 4 year old has it along with diabetes...he is one ACTIVE soccer player and can run circles around most kids! my boss has it too...i used to do her shopping and after a few trips to the store i was a wheat-free pro!

many restaurants have wheat-free menus...just ask! yes, some things are more expensive but once you get the hang of what you like you can balance the budget to adjust i guess. now take a deep breath and start here...

http://www.livingwithout.com/welcome.htm

http://www.google.com/search?q=glute...en-US:official


you will get thru this and feel soooo much better soon!!! ride on!!!

Initial disclaimer: I do not have celiac's and have not had to eliminate wheat....

But I do cook a lot and like you, love bread and other starchy foods. So I tried to think of a few alternatives.

Tortillas made with corn flower should be ok. And you can use them to make wraps instead of sandwiches. In Norway we have lefse made with potato which can be made using potato flower instead of real flower. Works like a tortilla basically but a bit thicker. Also a good way to use up leftover mashed potato if you ever have any.

Being from Northern Europe, I'm big on potatoes. We use potatoes with every meal (my dad insists it's not dinner if it doesn't have potatoes and will even have potatoes with his spagetti bolognese). And they can be used in a very wide variety of ways! If you want potato recipies, just let me know.....

It is not the end of pasta, bread, pancakes, waffles etc! Hardly!
Replace those beloved foods with rice & other starch based ingredients.
Go to Whole Foods if you can, check out their freezer section, GF foods. Excellent breads, scones, cookies, muffins.
Find health food stores in your area.
Shop online for mixes and foods. Check out shopbydiet.com or glutenfree.com.
Buy Pamela's baking mixes. These are awesome.
Glutino is another brand that has great snack (carb) items.
Pick up the current Living Without magazine (or order online). They have a list of great restaurants - both chains nationwide and local states/areas - that know how to serve GF customers.
This will get easier and you may be surprised at the amount of food out there, and how good it is. Your tastebuds will adjust and you will feel unbelievably better. :)

You are not alone. Knotted has it, and she has not eaten wheat in about 6 years. It's not that hard to do, you just have to be alert.

Knott says to send her a PM, she's giving me a massage right now and says she'll get back to you soon. :p

Hi, OTG

I'm sorry about your diagnosis, but glad for you at the same time. I, too, have had a recent diagnosis. In retrospect, I may have preferred celiac, as at least I would know immediately what to not eat. With Crohn's it's anyone's guess. It's going to take me some time to figure out what I can and can't eat and to understand this disease!

I know people who eat gluten-free, and often, I've surprised myself by choosing, based on flavour, gluten-free products myself. You'll do okay, really! :) There are lots of sources of carbs, including rice, corn, potatoes, and some interesting grains like quinoa.

As for carbo-loading - well, it's never really worked for me. Pasta, I think, has never gotten the energy to me when I wanted it. Potatoes, along with some kind of protein, has been the most fabulous energy food for me, for years! It was my favourite meal between laps during 24 hour racing, and also my favourite after-heavy-workout recovery food - whether that was after a long hard ride, or kickboxing.

If you want to chat about how you feel about your diagnosis, feel free to PM me. I'm new to this, too, and you may be surprised at some of your emotions!

Hugs,
~T~

Are you on B12 shots or B12 sublingual?

I'm on sublingual, mainly because it's a whole lot cheaper than the shots. Methylcobalamine works better for me than cyanocobalamine (both are variants of B12, but methyl costs about 2x as much) If I accidentally eat some wheat and start getting sick I take an extra one. Maybe it's my imagination, but the extra one seems to help.

Once you know what to look for, it's second nature to keep away from the wheat. Especially once your tastebuds learn the association between that yummy garlic bread and being sick for days afterwards!

Eating out is a little harder, but oh so doable. Thai food is my favorite, and luckily wheat isn't an issue there.

I'm willing to suffer for beer...:D Suffering right now with a Boont Amber Ale!

My favorite brownie mix is Cravings Place Oooey Gooey Brownies. Their chocolate chip cookie mix is good, too. Best pizza dough mix I've found is Namaste Foods. (actually, Namaste's brownie mix isn't bad, either.) They've got a pancake mix I want to try.

You can still eat pasta to carbo load, just make sure it's rice pasta. I get mine in the asian foods section of the store, it's about 1/10 the price for the same noodles as in the GF/health food section.

Rice crackers instead of wheat crackers. Rice cakes instead of toast. Rice bread s*cks in my opinion, but there is a bread company <Ezekial Bread?> that makes a GF bread with ground pecans that is really good. It comes frozen, so you just toast a piece when you want it and it lasts in the freezer for weeks.

For energy on the bike I eat Clif Shot Bloks and Lara Bars. (Clif bars have oats, and oats do make me sick.) I usually keep a couple Lara Bars with me in case I get hungry.

PM me if you'd like!

I don't have coeliac (my aunt had something similar as a child but outgrew it apparently) and the advice given above is what would immediately spring to mind anyway. As she couldn't eat wheat she used to get a lot of wheat free stuff on prescription (free I think). She absolutely hated the bread with a passion, my mother on the other hand (not wheat intolerant) loved it.

I have a breadmaker as I think shop brought bread is crap (and full of god knows what) and it has a setting to make gluten free bread. It mentions some gluten free breadmixes that you can buy (at least in the UK) though I have never tried them. A friend of mine was avoiding wheat for quite a while and I'm sure she used to eat rye bread and was investigating using spelt flour to make bread. Both rye and spelt flours seem to be easily available in large supermarkets in the UK.

Edit: was in supermarket at lunchtime to pick a few things up and looked at the various flours on offer. Spelt is made from an ancient wheat variety, didn't say anything about gluten levels (the rye is apparently low gluten). I'm quite shocked at that as my wheat avoiding friend was going on about it. They had gram flour which was wheat free but not sure what you could do with it.

I ordered a bunch of gluten-free products today, and I'm going to a grocery store tonight so I have something to eat. But, no, can't have rye or barley or oats, either.

My husband has been off gluten for almost 20 years, he cheats some but really likes rice. He's not a celiac, I don't think you will be able to cheat as much as he does. Anyway, good health food stores have almost everything, it's more expensive, but easy enough to find good stuff. Plus will all the low carb diets, people don't even ask anymore when ordering a burger without a bun. We recently tried some Italian gluten free pasta that was exellent, is was about $8 a box, where most corn/rice pastas are $2, and I think wheat based pastas are $1. Anyway, don't be discouraged, just try to adapt, it's easier then you think.

I get my rice pasta in the Asian foods section of the grocery store, 2 lbs for $1.19.

"Gluten free" is becoming a marketing plus, so you'll see it often on food that never had gluten in the first place. (EnviroKids corn cereal, for example.)

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Originally Posted by Offthegrid

I may not be able to eat oatmeal, either. My problems were a LOT worse when I was eating oatmeal every morning. I have read that the oats are "contaminated" because they are handled on the same equipment as wheat. Although it's possible I may be able to find some that are certified gluten-free.

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Don't oats have gluten?

Rice crackers are awesome. You can probably find spelt things that are gluten free too, like spelt english muffins (so good), spelt pretzles.

It's a big lifestyle change, but you can still get in your carbs. At least now you know what the problem is.

I don't have celiac, but I do enjoy cream of rice cereal often. I cook it with 1/2 soy milk, 1/2 water, and a touch of salt, then sprinkle cinnamon sugar on top and eat it with additional soymilk. A nice source of protein, and I love the taste!

Best of luck with the gluten-free foods. You've gotten some good suggestions here - hope you start feeling great soon!

Hello,

Try not to get too down about the diagnosis. I learned that I have gluten-intolerance/celiac two years ago, and the diet is very manageable once you have the information on which foods to avoid and where to find the carbs that you can have. Acclimating to celiac requires:
1) learning the list of ingredients/foods to avoid
2) proper planning (ie packing of lunches, etc).
3) a bit more hunting at Whole foods/specialty stores/websites for your allowed carbs and paying a bit more $$ for these foods

At the end of the day, the extra efforts and planning will pay off, because you will feel fabulous on a GF diet. Who knows, athletic performance could improve once you are absorbing your food again. Mine did.

In terms of carbs, you don't have to give them up. Substitute flour derived from wheat with flour derived from rice, corn, garbanzo beans, tapioca, etc. These flours can be purchased in most stores (even major grocery store chains). For a bit more money, purchase pasta dervied from rice or corn (again, sold almost anywhere). Most these pasta brands taste great. There are numerous brands of chips that individuals with celiac disease are permitted to eat (just read the labels carefully). And you don't have to give up cereals or english muffins...just find gluten-free section of the market.

Keep your chin up.
S :)

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Originally Posted by aicabsolut

Don't oats have gluten?

Rice crackers are awesome. You can probably find spelt things that are gluten free too, like spelt english muffins (so good), spelt pretzles.

It's a big lifestyle change, but you can still get in your carbs. At least now you know what the problem is.

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Spelt is a variant of wheat, so be careful.

If you crave something made with cracked wheat (like bulgar) try using quinoa instead.

I just had a great quinoa salad (using just plain quinoa grains) at a restaurant Trek took me to in Pt. Reyes Station. It was essentially a pasta salad with cooked quinoa grains instead of pasta. You could get salmon or chicken with it, but I had it plain. It was "tasty" as Trek says.

Quinoa can be made into a great warm morning breakfast cereal, too. Treat it like oatmeal with honey brown sugar, nuts, raisins, etc.

I think quinoa is a complete protien, too. And it's very cute when it's cooked! (like little ufos with rings around them or like little Saturns. very cute:p )

There are quinoa pastas out there, but they are very expensive and I like just using cheap rice pasta from the asian foods section. It takes a little more olive oil to keep the rice pasta from sticking to itself, but it turns out great! SKnot eats it, too.

I think the basic message in many posts above is to shift your focus from what you can't eat to what you can eat. You need to keep a corner of one eye on the can't eat list too, especially when eating out, but mostly you just need to build up a repertoir of foods you like and that work well for you. There are lots of options out there, and learning new recipes can be fun.

At least, that's what I keep telling myself, living on a low fiber diet in a high fiber world. Not exactly the same problem as yours, but shifting my focus away from "Darn! But I love raw fruit and veg!" to "Hmmm... what can I do with this?" has helped enormously in terms of my spirits. And my guts are doing better too.

OTG

I just wanted you to know that I have been thinking about you alot since reading your diagnosis.

I am not celiac but know a few people who are. It is a very inconvenient condition to live with and will mean many changes for you. The upside is you will feel so much better because of making the changes. I am thinking you will end up healthier and stronger than you are now once your system is fully purged and healed.

Hang in there - one day at a time - you have received excellent suggestions - I just wanted to add my support.

Sorry to chime in so late, OTG.

But just to let you know, if I have a big ride or workout planned, I find that white rice is as good as any pasta load I've ever done the night before.

My Japanese parents force fed me white rice growing up as a kid, so I rarely eat it anymore. However, I have found it's a great fuel source. Sometimes I'll have it with a bit of curry, or teriyaki or even vegetarian chili. If I plan to run one day, the night before it's rice. And like Knot said, finding a good Thai restaurant is great!

I'm both severely fructose and lactose intolerant, so I have had to make adjustments, but like others said, focus on the tasty things you CAN eat, instead of the ones you can't. Good luck!

Last night's dinner: posole - no wheat or gluten (easy crock pot recipe: 3 shoulder steaks cubed, 3 big 29 oz cans of hominy, 3 heaping tbsp chili powder cooked on low for 5 hrs. Top with chopped onions, tomatoes, avocadoes, sour cream and fresh squeezed lime juice)

Night before last dinner: Trader Joe's brown rice fusilli with artichoke puttanesca sauce, and fresh shaved parmesan. - no wheat or gluten www.traderjoes.com

This morning's breakfast: pancakes (plain) and pancakes with fried banana slices. Real maple syrup. Apple butter.

YES!!! PANCAKES!!!!:D
Pamela's Baking and Pancake Mix. www.pamelasproducts.com
Crispy edges, soft springy cake, warm and yummy! For the banana pancake, slice banana into circles like double-thickness quarters, let sit on griddle for about 30 seconds, then pour the pancake batter over the slices and cook like a normal pancake. - no wheat or gluten. This mix has almond meal in it, which makes a *fabulous* flavor and texture.

Trek has been almost gluten-free this week, and she hasn't complained yet! She says, "I'm not missing ANYTHING!"

Knotted, I have that pancake mix! I made it last night -- not too bad. I like thicker pancakes, though, so next time I'm going to try less water than the recipe called for.

The GF thing is actually going surprisingly well. I'll have to add a Crock pot to my wish list -- after a breadmaker. Many of the GF products I've tried so far taste pretty good except the bread.

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Originally Posted by KnottedYet

Last night's dinner: posole - no wheat or gluten (easy crock pot recipe: 3 shoulder steaks cubed, 3 big 29 oz cans of hominy, 3 heaping tbsp chili powder cooked on low for 5 hrs. Top with chopped onions, tomatoes, avocadoes, sour cream and fresh squeezed lime juice)

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Hey Knot you made posole without TRIPE?


Susie, glad you've discovered there's life without wheat. I made some pasta out of amaranth flour last night. it can be done!

Offthegrid "The GF thing is actually going surprisingly well. I'll have to add a Crock pot to my wish list -- after a breadmaker. Many of the GF products I've tried so far taste pretty good except the bread"

OTG, Knott was just saying you could pass on the breadmaker, that leaves you more money on the list for something like....a bike :).

Seems that what breadmakers do is knead the dough to make the gluten stringy. No wheat, no gluten, no kneading needed.

Think of breads like cornbread, zuchini, banana....GF bread is made with batter like those, rather than a dough.

I agree with Knot, forget the breadmaker. By making your bread by hand you
are using your muscles and keeping stronger and fitter. and you're right,
no gluten, just mix the stuff up!

Um ... I suck at cooking. Really, really seriously suck at cooking. I've messed up instant rice, and I'm NOT kidding about that.

So all the advice about things you can make is really, really, really nice and truly appreciated, but it's like speaking Greek to me. Fusilli? Tripe? Puttanesca? Posole? Hominy? I have NO IDEA what these things are, much less where in the heck to find them or how to even begin to prepare them.

But I would like to be able to make my own bread. I just don't have the talent or patience to hand-knead it and such.

Hi Susie,

Sorry to be late to see this thread, but I wish you the best. I know virtually nothing about this disease, but I will figure out how to make something tasty that is GF before we go to Lake Placid! :)

And yeah, slow cookers rule. Definitely get one of those, potatoes do very well in them amongst other friends like peppers, tomatoes, well heck any veggies you have on hand :) the best part is you mostly have to think of a bunch of stuff to put in but once you do it does all the hard work.

Good luck figuring it out, and I bet when you start feeling better it'll all be worth it.

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Originally Posted by tygab

I know virtually nothing about this disease, but I will figure out how to make something tasty that is GF before we go to Lake Placid!

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I just have to find some GF graham crackers so I can make s'mores! Yummmmm ...

I'll be bringing a bunch of my own GF stuff. They have GF hot dog rolls and then you just have to make sure the hot dogs are GF, too. Same with hamburgers. I bet most of the food they typically serve volunteers is out, though.

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Originally Posted by Offthegrid

But I would like to be able to make my own bread. I just don't have the talent or patience to hand-knead it and such.

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Uhhh, hang on a second. Kneading is only done to bread made with gluten. You won't be kneading anything, cuz you won't be eating gluten.

If you are making "bread" it will be a batter, not a dough. No kneading. No gluten.

More than likely you will be taking a couple cups of mix, adding an egg some oil and a cup of milk, beating it briefly, then pouring it into a greased pan and baking it.

5 minutes prep time, tops.

Makes good "bread" though.

Uh, and "graham" is wheat, so I'm not sure what you can do for graham crackers. I've never seen any gf graham crackers, but I bet you could use GF gingersnaps.

Edit: hot dogs and hamburgers, I eat 'em naked! no fuss, no bother, no bread product to worry about. And if you go to a restaurant they are very cool about giving you your burger without a bun. Most sandwich places (Subway, etc) don't even bat an eye if you ask for your sub-stuffing to be put on a bed of lettuce instead of a roll. Watch out for the vegetarian burgers and hotdogs. Those critters are often laden with gluten.

I thought of ya'll today (especially Knott)... Paul Harvey had an ad for a new gluten free beer! Budweiser is making one but leaving out the barley and something else. I just wonder if it will be awful?:confused:

OOOOOOHHH!!!! I *want* that beer!

I drink beer anyway, willing to pay the price. Microbrews seem to go easier on my tummy than the big brands (the bigt brands sometimes add gluten to make the beer foamy)

Searched around the gluten-free section of my favorite *expensive* but good selection natural foodstore today but didn't see any GF graham crackers. Saw some spiffy arrowroot cookies and gingersnaps and vanilla wafers that would all probably make nice S'Mores, though.

OTG, I dunno if I've mentioned it before, but The Cravings Place makes really really REALLY good cookie and brownie mixes. www.thecravingsplace.com I just bought some of their pancake/baking mix to try, even though I adore Pamela's pancake/baking mix. (mainly because the store was charging 2x what I felt like paying for a big bag of mix) T.C.P. brownie and choc chip cookie mixes are my favorites, so I have high hopes for their general mix. Usually you can just substitute your favorite general mix for flour in any of your favorite NON-KNEADED recipes.

I also checked out the frozen GF bread and rolls section. Kinnikinnik and Wheatless In Seattle make a lot of nice breads and rolls. I have no interest in them, but you can probably google them and order some. En-R-Gy breads and rolls are really yucky, in my opinion. I'd stay away from them unless that's all you can get.

Oh, yeah, and Pamela's sells pre-made cookies and such as well as mixes. The cookies are ok (for pre-made). A little dry, generally. (The Cravings Place are my all-time favorites, so I'm really biased.)

OTG, you just gotta come to Seattle! We've got GF restaurants and darn near every grocery store has a GF section, even if it's a little one.

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Originally Posted by KnottedYet

Edit: hot dogs and hamburgers, I eat 'em naked! no fuss, no bother, no bread product to worry about.

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Here one way hot dogs are served is with "lompe", like a soft tortilla made from potatoes. There is some flour in it to bind it, but it doesn't have to be wheat flour. You could probably experiment with a gluten-free flour or bread mix. My recipe: Boil 4-5 good-sized Yukon gold potatoes in their skins. Peel while still warm and mash. Add a good dollop of butter and a couple heaping spoonsful of sour cream. Then stir or mash in flour to make a fairly firm dough. Wrap in plastic and chill in the fridge overnight. Take bits about the size of a ping pong ball and roll them out thin (about the size of a frying pan). Cook them on a dry(!) frying pan or griddle til they just start getting "tan" spots, each side. Place under a tea towel with something heavy on top. That helps keep them soft. Dough and finished lomper can be frozen and later thawed. You can also try different types of potatoes, but the Yukon gold were best of those I tried back in Madison -- had a hint of almond taste :)

Ok, just made pancakes with my newly purchased T.C.P. pancake/baking mix.

In a nutshell: Bleh.

Very fluffy, fragile, and bland. Pamela's Products general mix is definitely the winner. (I found the 4 lb bag online for $2 cheaper than at my Manna Mills store, but still not as cheap as Trek and I saw last night at Berkeley Bowl.)

PP gives you more of a crepe style pancake, TCP gives you a cakey style pancake. PP has buttermilk powder and almond meal in it, which really does add to the entire experience.

www.thecravingsplace.com
www.pamelasproducts.com