Diagnosed with celiac (can't eat wheat)

[Offthegrid]

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.

[Bikingmomof3]

(((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.

[mimitabby]

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

[mimitabby]

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

[velogirl]

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?

[Offthegrid]

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.

[mimitabby]

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!

[DebW]

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

[HappyAnika]

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!

[Offthegrid]

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

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

[bouncybouncy]

*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=gluten+free+&start=0&ie=utf-8&oe=utf-8&client=firefox-a&rls=org.mozilla:en-US:official


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

[uk elephant]

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.....

[skicliffs]

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. :)

[Trek420]

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

[LBTC]

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~

[KnottedYet]

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!

[tattiefritter]

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.

[Offthegrid]

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.

[SR500]

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.

[KnottedYet]

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.)

[aicabsolut]

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.



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.

[solveig]

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!

[gardinsa]

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 :)

[KnottedYet]

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.

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.

[Duck on Wheels]

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.

[eclectic]

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.

[Bluetree]

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!

[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)

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!"

[Offthegrid]

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.

[mimitabby]

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)


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!

[Trek420]

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.

[mimitabby]

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!

[Offthegrid]

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.

[tygab]

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.

[Offthegrid]

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!

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.

[KnottedYet]

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.

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.

[Aggie_Ama]

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:

[KnottedYet]

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.

[Duck on Wheels]

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

[KnottedYet]

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

[Duck on Wheels]

Just got back from the store. Noticed a whole section of GF foods, including waffle mix. Anybody interested in trying that? Knot? If you want a sample, jes' pm me an address.

[KnottedYet]

Thanks, Duck! I think I'm good with the mix supply here in sunny Seattle. :D

OTG - how are you doing finding GF stuff? Have you done it all online, or have you found a store yet? This is my B12: Source Naturals MethylCobalamin 1mg. www.sourcenaturals.com I get the 60 tablet bottle for around $10 or so. 16,670&#37; of your daily value of B12 per tablet! (and that only brings my blood levels up to the "low-normal" range)

[eclectic]

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.

mmmmmm I LOVE lompe. they call it "Lumpe" here! OTG definately try it. It is soft and tender - way better than soft flour tortillas. Thanks for posting how you make it DOW. I have made lefse but could never find out how Lumpe was made.
For lefse we boil red potatoes, and white potatoes whole, peel them after cooking, rice them, mix them 1/2 and 1/2 then rice them again. I wonder if it would make a difference to Lumpe - I don't think we can get Yukon gold here - I haven't seen them anyway. but then I have never really looked.

[eclectic]

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).


Wow - what we don't learn on this great forum! I have been fighting chronic asthma for the last 2 years. It is never very bad but is always there. After a multitude of tests, catscans, xrays, medicine - it is still the same.

I read this post and a light came on. for the last few days I haven't been eating anything that is made from wheat and guess what? my breathing is better.

I ate part of a flour tortilla yesterday and the old feeling came back.
I ate some cake and 2 cookies and there was no problem - DARN! ! !
After the New Year I am going to go off all wheat for 2 weeks then introduce some back in and see what happens.

After reading this and calling her I discovered my mom quit eating whole wheat hot cereal years ago because it triggered her asthma - now why didn't she tell me that sooner before I spent $$$$ on all the tests ????

for the past 2 summers I told everyone - "Just you wait - if I can ever breathe I will kick butt going up hills" This summer I just may be able to do it!

What kind of sucks is my dad's a wheat farmer :p

[Duck on Wheels]

What kind of sucks is my dad's a wheat farmer :p

Yep! We had 6000 chickens I was allergic to.

As for the lompe ... if you've been making lefse with potatoes, then that's lompe. I think for classic lompe the usual flour to add to the riced potatoes is barley flour. I don't know how much gluten there is in barley, but if barley flour is also a no-no, then I bet rice flour will do the trick and bind well enough. And you can use any variety of potatoes you like. I bought about 5 varieties at a potato stand at the farm market, just 4-5 of each, and compared results. Of the ones I tried, the Yukon gold turned out best. They mashed up smooth, made an easy-rolling dough, and had a hint of almond in the flavor.

[Offthegrid]

Here one way hot dogs are served is with "lompe", like a soft tortilla made from potatoes.

This sounds really, really, really good. But maybe that's just because I've been having massive cravings for french fries lately. :D

[Offthegrid]

Wow, so much updating on here !!!

First, for my own update. I'm definitely still lactose intolerant. Got a GF milkshake the other day while I was sick with a cold, and man did it ever make me sick. I *hope* *hope* *hope* that when my small intestine heals I can have milk again.


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.

I'll be visiting Seattle for a day sometime around the first week of August. Maybe you can show me around! (I'm actually going to visit a friend in Portland, but we're going to take a day trip.)

Wegmans has a decent selection that I'm going to mainly live off for week to week things. They have GF frozen waffles that are absolutely delicious. They also have some frozen pizza dough (and a complete frozen pizza for $7) that isn't good, but it's convenient.

AND Wegmans puts little seals on ALL of its brand name products that say if they are gluten free, lactose free, etc., so I can get Wegmans pancake syrup and Wegmans spaghetti sauce and not have to spend a fortune for the peace of mind to know that it's safe.

No GF soups, though. Do you make a GF soup? I'll have to look in the recipe book that I have, but if you can't use a commercially available broth or boullion, that is probably way too much work for me.

I'll definitely have to try those brownie mixes you were talking about.

But Wegmans doesn't have some of the mixes (Pamela's for instance), which I probably will continue to order online. There is a Trader Joe's near Philadelphia (about an hour drive each way) that I'm going to visit at some point to see what kind of selection they have.

There is a specialty store in Amish country that has a bunch of the specialty flours, but that store was a good hour's drive, too. I tried a banana bread that actually turned out OK (needs a lot more sugar)!!! Who knew I could actually *make* a bread?! Wow.

I want to make some regular bread sometime soon, though. If there's no kneading, then perhaps I can do it myself.

The Ener-G hamburger bun I tried was tolerable. But I want to try corn tortillas with hamburgers next.

Thanks for the B12 tip. I'll have to check it out because I'm almost out of the $15 ones (for 30-pack) from the health store.

[KnottedYet]

I make soups, and since they never had any gluten in the first place, they end up gluten free. (toss cubed steak, chopped potatoes, carrots, celery, garlic, and water into crockpot = GF soup!)

I buy some soups, but since it's so much cheaper to make my own now that I have a crock-pot I mostly do that.

Gotta be careful with soups. Quite a lot of them have wheat or "vegetable protein" or such. "modified food starch" can be a booger. Read the labels, and if it isn't clearly identified I assume it's got some wheat in it. Lots of GF soups in the world, but since they never had gluten they aren't labeled GF.

Yeah, the lactose can be a problem. Generally if my gut is in a bad mood I stay away from milk. If I want a fake milk, I use Rice Milk. Haven't bothered to try Lactaid cow's milk, cuz the rice milk is so cheap and tastes fine.

Wegman's sounds like a good store!

[tygab]

Thanks, Duck! I think I'm good with the mix supply here in sunny Seattle. :D

This is my B12: MethylCobalamin 1mg.

Whoa, I realize this is random, but that's precisely the stuff [well I got a different brand] I had to hunt down to help my diabetic kitty with his weak hind legs. Apparently this is a common symptom in cats. So it's supposedly good for the CNS too.

...sorry for the tangent...

[KnottedYet]

Yup, and since celiacs can't absorb B12 properly, they get weird CNS symptoms sometimes. Pretty wild how everything interconnects in the body's systems, eh?

[Wahine]

I can't believe how much I've learned from this thread. I have an allergy to something related to wheat processing, it's never been pinpointed and I know it's not the wheat because I can eat wheat in Europe and Asia without trouble.

Anyway, I am faced with training for Ironman and was dreading figuring out how to fuel up. Everyone here has had such great ideas that it almost seems easy now.

Thanks for contributing to such an intellegent thread and unknowingly helping me train.

[Offthegrid]

I tried quinoa this morning. Yuck. But I managed to eat it.

I use 8th Continent soy milks. They are pretty good, as far as soy milks go. For hot chocolate when I was sick, I heated up the chocolate soy milk and added some Da Vinci hazlenut syrup I already had for my latte machine. Yum.

The Lactaid definitely has an aftertaste to it, but it's tolerable.

I will definitely have to get a Crock Pot next.

[Duck on Wheels]

When a cereal bar says, "gluten free, wheat free, egg free, dairy free, soy free and fat free,"
it really makes you wonder WHAT in the world is actually in it.

My spin instructor last year gave us some samples of an energy bar called "green". It actually was green inside, which looked yucky, but it tasted pretty yummy. Made with dates, figs, and bean sprouts, as I recall. Don't remember whether there were any grains, egg, wheat, dairy, soy or fats in it, but it might be worth looking up.

[KnottedYet]

OTG- have you tried Lara Bars?

www.larabar.com

their website is a bit slow, oh well. Around here I can find Lara Bars just about everywhere, and can buy them by the case at Costco.

[LBTC]

OTG- have you tried Lara Bars?


mmmmmmmmmmmm Lara Bars. Yummy!

~T~

[Offthegrid]

I've tried the Lara bar. It was o-kay. But they're not readily available here. And no Costco nearby. I paid $1.57 for one at the specialty Amish store and I've never seen them anywhere else. Had never even heard of them before celiac.

I might buy a case or something through the Internet come summer.

[Bikingmomof3]

OTG,
I like Larabars. Some taste better than others. Watch www.drugstore.com as they will have special sales on cases of them. My local grocery store carries them, but buying them online is much, much leass expensive for me.

[Offthegrid]

From the Web site, there are only 2 Larabars that are labeled as gluten-free: lemon and cinammon.

[mimitabby]

someone said soup?
when I make soup, the only broth i need is from the veggies and meat that I am cooking. I HATE boullion. it's got this artificial tang that i just can't get past.

[KnottedYet]

From the Web site, there are only 2 Larabars that are labeled as gluten-free: lemon and cinammon.

i eat all of them. no wheat, oats, barley, or rye and i'm there! I know they are ok for me, but you might want to call them. Could be a processing plant that shares with wheat products, rather than an ingredient issue.

[LBTC]

My recollection is that the cocoa molet (spelled wrong, but my favourite flavour - spicy chocolate! mmmmmmm) is that it was called gluten free, dairy free.....

I haven't had one in months, though, since I haven't been riding so haven't needed an energy bar....so my memory may be incorrect. I really wanted to try the ginger snap flavour *sigh* can't tolerate ginger though.

Enjoy what you can get offthegrid! How are you feeling health-wize now that you are gluten free??

Hugs and butterflies,
~T~

[Offthegrid]

i eat all of them. no wheat, oats, barley, or rye and i'm there! I know they are ok for me, but you might want to call them. Could be a processing plant that shares with wheat products, rather than an ingredient issue.

But why would they specifically label *only* two of them as gluten-free? Makes me think the others aren't, even though nothing suspicious is listed in the ingredients.

[KnottedYet]

Call or email them and ask. I think it's likely a processing plant issue: if any ingredients in the bars are processed at a plant that also processes wheat products, they have to comply with labelling as though there were a possibility of cross-contamination.

There is also just a lot of lag-time in packaging, if something never had gluten in the first place it might not be labelled "gluten free". The yogurt I'm eating right now for b'fast isn't labelled "gluten free", but I'm betting I'm safe. It does have "modified food starch" in it, but notes that it is from corn. (sometimes it's wheat or potato, so keep an eye out for m.f.s. that doesn't specify what it is)

Of course, one can buy an entire bunch of bananas for the price of a Lara Bar. I've been doing that, cuz SKnot *devours* my Lara Bars and it's just too expensive to feed his habit. When biking season picks up I'll have to hide my Lara Bars somewhere. I get bored with bananas though, and they seem to always get smooshed. (someone posted a pic of a banana holder, which was eerily reminiscent of the things you find in certain specialty adult-only shops... :D)

[Offthegrid]

I can't buy them regularly, so I'm not too worried about it. But under the FAQ section of the Larabar Web site, it says they are gluten free. But only two of the bars are specifically labeled as gluten-free under the nutrition info. *sigh* Which again just raises the point that many food manufacturers do not make gluten friendly labels.

On a good note, I went to Wegmans yesterday and they must have just gotten a shipment in because they had a ton of GF food they didn't have the other weeks -- including frozen brownies and muffins. I didn't buy those, but did buy some "English muffins" which actually worked pretty well as hamburger buns (which Wegmans didn't have).

[Offthegrid]

Enjoy what you can get offthegrid! How are you feeling health-wize now that you are gluten free??

That is coming slowly but surely. Some days I feel good, but other days I am still having problems. It apparently can take quite some time to get healed and feeling better. I also need to be tested for vitamin deficiencies, but am taking supplements in the meantime.

[KnottedYet]

Two wheat and gluten free recipes:

Peanut butter cookies

1 cup peanut butter
1 cup sugar
1 egg
1 tsp vanilla

Mix together. Drop by teaspoonfuls or make into small balls onto cookie sheet. Bake at 325* for 15 minutes.


Green Dip

15 oz canned white beans (canelli) drained
1/4 cup fresh parsely leaves
2 tblspns fresh lemon juice
1 garlic clove
1/3 cup olive oil

Blend it all up and pour into a bowl. Garnish with some parsely. Serve with rice crackers and sliced veges for dipping.


The cookies are great, magic! My mom made up a big batch of them. Yum! And the dip I just had at a party this evening. Good stuff!

[KnottedYet]

Hey, OTG, have you seen this chickie's blog yet? She's got some good stuff.

http://glutenfreegirl.blogspot.com/

And she's here in Seattle.:p

Hot-diggity, no more sick days for a beer!
http://www.celiaccentral.org/Other/Anheuser_Busch/332/

Do you get bald spots on your tongue after a gluten encounter? I imagine that's what's also happening to all the little villi in my small intestine... poor lil' critters all sloughing away... sigh. Just for a beer, or a mousse-filled chocolate.

http://www.cafepress.com/chickcouture I like the "Seitan is Evil" shirt, cuz seitan is pure gluten, so it's... y'know, eeeeevil!

[AllezGirl]

Hey OTG,

Just caught this post. There's a Trader Joe's right near my house. I LOVE Trader Joe...I'm gonna marry him when I grow up :p ! He has plenty of Gluten Free products (but alas...no Two Buck Chuck...PA liquor laws suck...I'm a poet and didn't know it :D )

I guess you're due for a visit down my way again....

[KnottedYet]

GLUTEN FREE BEER!!!

I bought the first sixpack of Redbridge in north Seattle! So new it wasn't even on the shelf yet!

Mmmmm, not bad! A nicely hoppy amber, sweetish aftertaste, more like a microbrew amber than a Budweiser. $8 for a sixpack. And best of all it didn't make me feel yucky!

Hot diggity! GF beer!

[Offthegrid]

I never did care much for beer, but I will probably get it for the Super Bowl. (I prefer rum and coke. Yum.)

But wanted to share my latest discovery: buckwheat. I've been searching for an alternative to my morning oatmeal that I can make at work, and quinoa just made me want to vomit. But buckwheat (actually a fruit, not wheat at all) is pretty darn good! Not *quite* oatmeal, but definitely very edible.

[KnottedYet]

Ewwwwww...

Just watched a yummy ad for T.G.I. Friday, and EVERY SINGLE FOOD they showed had wheat in it.

bummer.

[LBTC]

I hear you.

At my office every day or so, somebody orders in lunch for a meeting and there are always leftovers. Today it was pizza. Wasn't too bad until I could smell it....so let's see: wheat, yeast, tomatoes, pork, dairy....there ya go. half of the things I can't eat right there. yahoo!

Good thing the curry stir fry thing I made for dinner was so yummy!

Hugs and butterflies,
~T~

[KnottedYet]

this is a duplicate of a recipe I posted elsewhere, but man this is so good!

Today's Culinary Adventure: Gluten Free Matzoh Ball Soup

Oh, MAN, this turned out soooooo yummy! But it looks soooo ugly! I was going to post a picture, but decided I shouldn't (my first attempt at matzoh balls aren't at all photogenic) Oh, but they ARE TASTY!!!

They fell apart a bit when I cooked them. Next time I'll mash up the rice crackers finer, and shape the balls more firmly.

The Quasi-Recipe

Make a crock-pot of chicken soup.

While that's pretty much done and simmering happily, mash up a cup or two of rice crackers. (I used Trader Joe's Original Savory Mini-Thin crackers) Mash them up VERY fine! I don't have a food processor, so I put the crackers in a ziplock bag and crunched them over and over with the back of a wooden spoon.

Now you're ready to make Gluten Free Matzoh Ball Dough

1 egg
1 tblpspn olive oil
cracker meal

Stir the egg and olive oil until it is well mixed. Add cracker meal until you get a firm dough. Chill in the fridge for at least 1/2 hour.

Pull off a few cups of stock from your crock-pot of chicken soup. Enough to half-fill a saucepan. Get it simmering. Bring out your dough. Roll a tablespoon of dough into a ball. (like a ping-pong ball) Make it a firm ball, because every little air pocket is going to be a weak point when these critters cook! Do this until you are out of dough. Makes 6-8. Add all the balls to the simmering stock, cover, and simmer for 1/2 hour.

Add all the contents of your saucepan back to your crockpot.

Serve a couple matzoh balls to each bowl of soup.

(and you might want to double the recipe for matzoh balls, because this made barely enough for 3 or 4 bowls. and they're sooooo good! MMMMMmmmmMMM!)

[KnottedYet]

Gluten-Free beer review.

Well, today I bought a six pack of Bard's Tale Beer "Dragon's Gold". It was on sale, and Budweiser's "RedBridge" wasn't.

I know I'm supposed to love it because it's a hand-crafted micro-brew small company gourmet GF beer.

But I don't.

It's wimpy. Wimpier than RedBridge. I never thought I'd say a Budweiser was hearty, but dangit, the RedBridge has more b@lls than Dragon's Gold. RedBridge has a good bit more hops to it and isn't quite as sweet. If you like a mellow smooth beer with very little bite; Dragon's Gold will make you happy.

I like hoppy vibrant bite-you-back reds and ambers, so I'll stick to RedBridge until something better comes along.

(besides, RedBridge is cheaper....:D )

[Wahine]

Gluten-Free beer review.

I like hoppy vibrant bite-you-back reds and ambers, so I'll stick to RedBridge until something better comes along.

Me too. I'll be keeping a close eye on your GF beer posts. I'm still drinking the gluten kind. Doesn't seem to bother me much but it would be a good experiment to go to a GF beer.

[Wahine]

I love bread and I haven't been able to find a wheat free substitute that I liked until today...

Ener G Brown Rice Loaf

I've tried other brown rice loafs and didn't like them much. This is pretty good. Even DH gave it a stanp of approval. I got it in the Organic section at Rosaurs (sp?).

I am currently eating my second grilled cheese sandwich and thoroughly enjoying it. Especially since I know I won't have a sore tummy later.:) :) :)

[KnottedYet]

Cool!

I haven't tried Ener G in a long time, cuz i didn't like it much before... or was it the tapioca loaf I didn't like? I dunno.

I've never really liked bread, so I don't miss it much. (crackers, now, those I looooooove! and miss!) (ooh, and crusty french bread!)

Very cool you found one you like!

[KnottedYet]

PIZZA!!!!!!

I used Namaste pizza dough mix, with an egg. I added a little Barbara's Pancake mix (yeah, pancake mix!) cuz I put in too much water and the dough was too wet.

Somehow, the 1/4 cup or so of Barbara's improved the Namaste 10-fold!

Got a great pizza out of it! Baked the dough for 10 minutes, then added one small can of tomato paste, 2 chicken sausages sliced into rounds, and mozzarella. Baked another 8 minutes.

SKnot and I devoured it like starving animals!

There's one piece left for b'fast.

MINE.....:D

[LED_now]

See this:

http://www.breakingtheviciouscycle.info/

Get the Book. The science behind Ms. Gottschall's research is so, so cool. Fascinating & helps to understand why this maks sense.

Also, be sure to check out this other site:

http://www.pecanbread.com/new/scdfoods1.html#beyond

for guidelines on stages of foods to introduce (didn't do that the first time & it made my first attempt very disheartening).

Lastly (& keep a box of tissue handy for this one!) here is a (kinda long, 30 min. appx) lecture -

http://www.breakingtheviciouscycle.info/elaine/elaine.htm

scroll down & click on the right of:

"Elaine speaking at the Dan conference in
Boston April 2005 THE GUT, BRAIN, DIET CONNECTION":

It REALLY explains stuff, easily understood though.

It's like sitting in an open biology/chemistry university class. (again, even I understood it & I was an english/arts type gal).

Best partof this eating plan? It's NOT for 'forever'.

Banana pancakes: very ripe bananas (2-3) & 2 eggs. Buzz for a sec in blender - or by hand, but blender is smoother - not too long, keep thickish...
Butter in pan, off you go...

Alot of carb grams, tasty as heck, excellent cycling breakfast.

Another thing (in the book) : "DCC Cheesecake" - Holy moly! Eat that for breakfast & I'm like, "snack? Why is everyone breaking for a snack?" LOL!
Just ensure that you have alcohol/sugar-free vanilla extract btw. Frontier brand vanilla meets those specs.

I was the world's least likely to cook before this. Shocking, even I can do this.

pm me if u want.

I'm not related or involved with anybody from this book etc., btw. This is strictly a personal post. Just to add a postive idea: the potential exisits for the future: back to 'normal' foods, choice...

Just trying to help, sharing something that is of value to me.

[KnottedYet]

Just took a quick look (will have more time later) and ran across the info about links with autism and neuro issues. All the celiac boards talk about this, too; and the celiac "brain fog".

Not that one causes the other (nothing is ever that simple, darn!) but the more aggravators you can remove from the system, the better the system functions.

Banana pancake recipe sounds YUMMY!!!

[susiej]

Just realized my web site has a few gluten-free (but not always nut-, sugar-, dairy- or egg-free) recipes on it.

http://www.christmas-baking.com/chocolate_roll.html (http://www.christmas-baking.com/chocolate_roll.html) Let yourself eat flourless chocolate cake with whipped cream filling! And did you know there is soy whipped cream in a can if you're dairy-free?

http://www.christmas-baking.com/forgotten.shtml (http://www.christmas-baking.com/forgotten.shtml)meringue cookies with chocolate chips

http://www.christmas-baking.com/haselnussbrotchen.shtml (http://www.christmas-baking.com/haselnussbrotchen.shtml)meringue cookies with hazelnuts

http://www.christmas-baking.com/macaroons.html (http://www.christmas-baking.com/macaroons.html)meringue cookies with coconut

http://www.christmas-baking.com/zimtsterne.html (http://www.christmas-baking.com/zimtsterne.html)meringue cookies with cinnamon and almonds

HTH. I had gestational diabetes and am now insulin resistent, so I'm always happy to help anyone with a dietary restriction.

[Offthegrid]

Wahine and Knot, I actually found a bread I absolutely love (although I hate the $4.49 price and that it's 120 calories a tiny slice).

Food for Life Almond Rice Bread. Toss two frozen slices in the microwave for 30 seconds, toast 'em, put on a slice of lactose-free Cabot cheese and some tuna, and I'm in heaven. (Hey - sometimes it's the simple things.)

[LBTC]

Well, I tried a different health food store and found almond flour and hazelnut flour. Of course, I can't remember what I'm supposed to make with this stuff, so hopefully I have the other ingredients for the recipes.

So far, I have found that the diet the ND put me on, which is somewhat based on this book, but I am allowed rice as my only grain, has not been helping much, especially with my energy levels. I am running out of patience, so this week I hope to find a few things that I can easily make that fit this diet.....and we'll see. I'm nearly ready to go back to my raw vegetable eating, whole grain eating ways!

Thanks for the timely posting of this info before I had already changed!

Hugs and butterflies,
~T~

[LBTC]

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


OTG, I checked out one of our local little health food stores, and found a gluten free graham style cracker mix! I found a link to the brand of foods:
http://www.kinnikinnick.com/index.cfm/fuseaction/GetInfo.Welcome/c_TypeID/99/ContentID/62013300434.html
They have lots of gluten free products that look pretty yummy!

See if you can get this brand where you are....

Hugs and butteflies,
~T~

[Offthegrid]

LBTC, thanks for the link. I was told about it at a celiac support group meeting last night (where I bought about a billion baked goods to freeze). I didn't know how to spell it, though.

I do have to look for some sort of graham cracker substitute. I gotta figure out a way to make smores for camping this summer.

[run it, ride it]

I'm hopping on the wheat allergy boat here, too.

It's only been a few months since I found out, and as a student I cannot sustainably afford GF food.

I am also vegetarian--just to make it a little trickier.

Since I cut gluten, I have gained some serious pounds as it no longer HURTS to eat.

Think I'm just gonna suffer through the pain of wheat this summer, as there are no GF-friendly grocery stores near where I'll be living.

It's good to know what causes the pain, though, even if I'm not much in a position to rectify it!

How is your GF diet going, Offthegrid?

[KnottedYet]

If you cook for yourself it is much easier and cheaper, and you won't need to search out a special gf-friendly store over the summer.

tortilla chips, potatoes, rice cakes, and rice fill my "bread" space.

rice pasta fills my "pasta" space.

Fresh fruits and veges.

Your vegetarian diet won't need to change, just stay away from TVP and Seitan. (Seitan is Evil! there is a t-shirt for celiackers that says that!)

Oh, and don't lick stamps or envelopes... that glue is gluten-based.

[run it, ride it]

True, true... it's probably just that dark defeatest just-before-exams part of me lamenting over the whole ordeal.

No homework will eat my life over the summer; just a mere 40-hour work week! Much as I will miss cereal and rice bread, I will have the TIME to cook.

And damn, I LOVE the taste of envelope glue! ;) Now I'm gonna be the creeper going around asking people to lick my envelopes for me.

[KnottedYet]

don't eat library paste, bad plan.:eek:

and don't be nibblin' the wheat-glue off the posters on telephone poles, neither! :D

[Lynne]

I probably missed it because there were a lot of posts to read, but I'm wondering about ON THE BIKE energy. I'm diagnosed with Celiac (confirmed via biopsy, genetic testing and IgG marker testing)-very sensitive, unfortunately. Had to get my own toaster at work, can't bring my own crust to a pizza joint, etc.

I saw a lot of discussion about wheat, but Celiacs cannot have barley or rye either. Also, oats are not ok as most are grown and sorted/stored with wheat and thus are contaminated. (Had to go to Mayo because I was non-responsive-the theory is that non-responsive Celiacs have a higher incidence of a deadly form of cancer, so had to get that ruled out).

I was diagnosed last July and just got the news today that my IgG marker is now close to a normal person's. This means my body has just stopped attacking my intestine and now I can start healing.

But I've been cycling (a lot!!) through it all. The problem is that I run out of energy at the hour mark. For whatever reason, I can't seem to access those stores you get to after the hour mark. And I can't seem to find much to consume to get the serious energy I need. By that point one is well into 500+ calories an hour; a serious defecit!!!

So, anyone here actually have Celiac and race? (not consuming wheat's tough-not consuming that plus barley, rye and oats is horrendous). If so, how do you get energy in while you ride? I'm set to try racing; how do you get calories while you race? What about distance riders? I'm set to try my first Century on Sunday and I'm sick to death of doing orange Gu and peanut butter nutrition bars (the only gluten free bars I can find). I tried Lara bars, but they seem to give me no energy.

Help!! I don't know any other serious cyclists who have Celiac, so I have no resources for the dangerous level of bonkage I'm getting into (I tend to forget where I am and how to get home when I bonk-and I bike alone a lot-so it's not just a matter of performance for me).

Thanks-I hope someone has some suggestions!

Lynne

ack!! Have to change my signature!! That was before I was diagnosed...I loved cheesecake and pizza. Yep, this has been difficult.

[LBTC]

Hi, Lynne!

I'm sorry for your diagnosis and severity, but glad that things are beginning to normalize for you. I do understand, having been diagnosed with Crohn's and still in the stage of trying to find drugs and food that work best for me. At this point I'm trying no grain other than rice, no pork, very limited sugar, no dairy (not even yogurt or cheese!), no yeast, very little alcohol, no tomatoes, onions, avocadoes, coconut or peanuts and trying to cook all vegetables. No question about it: this is *hard*, but I have discovered some great recipes that don't hurt, as I'm sure you have.

So here's my question: can you eat potatoes? dairy? My all time favourite energy and recovery food is a baked potato with some protein (used to do chopped ham & grated cheese) and some veggies. If I were to try this on the bike, I'd probably stick to baked or boiled chunks of potato. I've seen them pass these out at races, so I know it's not unheard of. You would, of course, have to enjoy potatoes and be able to eat them without aggravating your condition.

Cliffshots are made with brown rice syrup, and my favourite flavour, especially for the quick energy, is sonic strawberry (extra caffeine), and they have other flavours - you don't have to stick to orange flavour!

Have you tried electrolyte drops in your favourite drink? I found those helped a lot when we were snowshoeing this winter.

Have you considered that perhaps your body needs to heal more before you start riding longer? Right now, even though riding seems to hurt less than walking, I've barely been on my bike at all, only at slow speeds and for very short times (40 minutes). I'm convinced that if I truly get myself to heal and be healthier inside, that I'll regain the fitness and endurance I used to have. I sure hope so!

Good luck trying things!

Hugs & butterflies,
~T~

[KnottedYet]

We need to form a Celiac race team... There are enough of us on TE we could probably do it!

Lynne - I've found Clif Bloks, Clif Electrolyte, bananas, and Lara Bars to be my friends both on rides and races. (I eat only the Clif stuff during races, banana and bars are too much trouble then.) Even on days when my celiac is really grumpy, I can tolerate Bloks and Electrolyte. (sometimes that's what I'll eat for a meal if I'm feeling awful)

This is a long thread, with lots of good links. Feel free to PM me if you want!

[rocknrollgirl]

Hi Guys,
I am in the first few days of a one month trial wheat free. I am working with a nutritionist on this. My stomach is a mess, I have been scoped up and down, they did not find "anything" so they said IBS and sent me on my way. So 6 months later I am still a mess.

She took me off dairy first, they did not make such a difference, but 4 days of no wheat and I have not had a single pain. The real test will be in school this week.

I am having some energy issues. I have to replace my carbs, but I am working on it. My grocery store has lots of stuff.

[LBTC]

RnR girl, sorry to hear about your tummy troubles! Hopefully you can remove wheat from your diet and be good!! I'm just discovering some really wonderful choices - found english muffins made with rice flour - we're going to have burgers tonight so I can try these!

You'll find your solutions, and hopefully soon! PM me if you want to chat more. You might know that I'm still working out what I can and can't eat and what I should and shouldn't do.

Hugs and calm healing butterflies,
~T~

[eclectic]

I'm hopping on the wheat allergy boat here, too.

It's only been a few months since I found out, and as a student I cannot sustainably afford GF food.

I am also vegetarian--just to make it a little trickier.

Since I cut gluten, I have gained some serious pounds as it no longer HURTS to eat.

Think I'm just gonna suffer through the pain of wheat this summer, as there are no GF-friendly grocery stores near where I'll be living.

It's good to know what causes the pain, though, even if I'm not much in a position to rectify it!

How is your GF diet going, Offthegrid?

Hurting is not fun :( and there are other options as was pointed out.

the main thing I have found is I have to cook more. GF products are more expensive but if you don't buy the mixes and make stuff from scratch it is much more reasonable.
The GF bread is pricey but I found I eat less (I eat all my sandwiches open face now instead of 2 pieces)
Kinnickinnick makes a GREAT flax and sunflower bread that is very heavy so 1 slice is plenty (and only 90 cal)

At Walmart in the frozen food section I found some GF waffles 6 for $1.97 - no more than eggos! i put a little syrup, some banana and some walnuts on them Yum!

I love rice cakes w/ PB&J - I have to say I don't really miss bread up to this point. I use tostitos instead of crackers.

When I am tempted to eat wheat products I just think of how much better I can ride my bike up hills now :D

[eclectic]

Hi Guys,
I am in the first few days of a one month trial wheat free. I am working with a nutritionist on this. My stomach is a mess, I have been scoped up and down, they did not find "anything" so they said IBS and sent me on my way. So 6 months later I am still a mess.

She took me off dairy first, they did not make such a difference, but 4 days of no wheat and I have not had a single pain. The real test will be in school this week.

I am having some energy issues. I have to replace my carbs, but I am working on it. My grocery store has lots of stuff.

I bought a book on living with celiac disease and wheat allergies.
It was stated that in America Celiac is way under diagnosed and people are often sent home with the IBS diagnosis.
be sure to have them test you for celiac.
BTW read back on this post there are some great inexpensive ideas for carb replacement. It really isn't that hard. :)

[Dianyla]

But I've been cycling (a lot!!) through it all. The problem is that I run out of energy at the hour mark. For whatever reason, I can't seem to access those stores you get to after the hour mark. And I can't seem to find much to consume to get the serious energy I need. By that point one is well into 500+ calories an hour; a serious defecit!!!

<snip>

I tried Lara bars, but they seem to give me no energy.

Hey Lynne, long time no see! I've also been recently diagnosed with gluten intolerance, though fortunately it hadn't progressed to full-on celiac disease. I'm glad to hear you're on the road to recovery. :)

For heavy energy needs on-bike, Larabars just don't cut it for me either. Most of them are only about ~200 calories apiece, and I tend to burn out on them after a while. And besides, I can only ingest so much fiber on a ride before Bad Things Happen...

I actually just discovered a new energy source - mochi rice cakes. They are a soft dough cake made from glutinous rice (http://en.wikipedia.org/wiki/Glutinous_rice) and filled with different types of sweet vegetable or fruit paste. I just got back from a vacation to Japan where I had been snacking on them with wild abandon :rolleyes: until a friend kindly mentioned to me "hey, you know those things are like 400 calories apiece, right?" :eek: Then he pointed out that they're so dense in calories Japanese marathon runners eat them for convenience energy foods. The light bulb went off and I realized that these would be perfect as a riding food.

There is an ice-cream filled variety that is quite tasty, but wouldn't be practical on-bike. The most common version of the is called daifuku and is filled with red bean paste. There are other flavors either in the dough or in the filling like green tea, lotus paste, fruit conserves, etc. They are often sold refrigerated but will last a few hours at room-temperature. Some varieties are stored and sold at room temperature, too. You can get them in Portland at Uwajimaya (http://www.uwajimaya.com/). Elsewhere, look for them in Japanese bakeries/confectioneries or asian food import stores. Or, if you have the time, there is a recipe here (http://japanesefood.about.com/od/japanesedessertsweet/r/daifuku.htm).

Granted, they are very gooey and sticky (be careful not to choke!) and they may not be to everyone's taste. But I thought I'd throw it out here as a suggestion. I'm particularly fond of the green tea (matcha) flavored ones, and if you can find the sesame-seed encrusted ones those add a nice crunchy texture to the rice cake.

[KnottedYet]

Just had a pretty decent gluten-free frozen pizza: Amy's Cheese Rice Crust pizza. $8 for an itty-bitty pizza that fed SKnot and I (and only cuz SKnot had a late lunch! He wasn't too hungry.). I've been making my own pizza with g-f crust mix, and I think my 'za is usually better, but the convenience of a frozen pizza is pretty nice. Had some Redbridge gluten-free beer with it.

Ahhh, pizza and beer... :D

[OakLeaf]

I actually just discovered a new energy source - mochi rice cakes.

Mmmmmmmm, I LOVE daifuku mochi! That is like my favorite dessert in the entire world.

Has anyone here tried to make them? I haven't quite dared, even though I know how much better the restaurant-made cakes taste, than the pre-packaged preservative-laden ones you get in the Asian markets. (I have made the sweet bean/agar paste which you can just cut into squares and eat plain. But kneading and steaming the mochi dough scares me) :o

[spindizzy]

Lots of great links and recipes on this thread. My son has celiac. Though I though it would be hard trying to get him to stay within his food boundaries, it was no problem - he feels so cruddy when he eats gluten.

I do need a bigger kitchen, I've got every gluten-free flour known to man. There's also a grain called Salba (you can buy it ground or seed). It's quite high in antioxidants, Omega 3 and fibre. Has some protien too! (I find it quite expensive)

I've also found a mill that makes uncontaminated oats and oat flour. Lara's whole grain oats and also flour. www.creamhillestates.com. (it's a Canadian company) My son hasn't had any problems with it, oatmeal in the morning, fruit crisps mmmm!

[KnottedYet]

ooh! I want oatmeal! Thanks for the link!

[KnottedYet]

I finally made tabouli using quinoa instead of bulgar wheat.

(I'd meant to for a very long time)

It works great! Use your favorite tabouli recipe (or non-recipe if you pretty much just wing it like I tend to). The only modification I made was that I found it needed more lemon juice and salt than I added at first.

The texture is just right!

And, oh man, the smell as I was chopping up that parsley... talk about swooning with delight! I'm just beside myself with gustatory glee. This works!
:p

[three]

Just spotted this thread and thought some of you might want to know about the following place:

http://www.madwomanfoods.com/

They are an awesome local bakery that does ship nationally. They have yummy stuff (and I'm not on a restricted diet). It's a good place for getting delicious treats when you think you can no longer have them...

...and they are owned by my cycling buddy's parents! Super cool place. I know a lot of families with celiac children get cupcakes, birthday cakes, other yummy food from them. Hope it helps someone on here.

[Groundhog]

I'm reviving this old thread to add myself to the celiac club. Diagnosed two years ago in February...my re-birth day.

I'm very well adjusted to the diet (I cooked a lot pre-diagnosis, comes in handy now) but still haven't lost the 20 pounds I gained in the six months immediately prior to diagnosis. Hoping that commuting by bike 4-5 times a week will help me with that.